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Consumer/Citizen Engagement in Decision-Making FINAL REPORT
Prepared for: PHARMAC Ipsos-Eureka project: 08-023585-01 Date: 30 June 2009 Contact: Elishia Harding
Contributors: Elishia Harding Julie Young David Coulter Lucy Bourke Anna Pierce Fiona Collis
Office address:
Level 4, 493 St Kilda Road Melbourne, Victoria 3004 Australia +61 (0)3 9946 0888
Office phone:
Direct line: Fax: Email:
+61 (0)3 9946 0827 +61 (0)3 9946 0800 elishia.harding@ipsos.com
TABLE OF CONTENTS
Overview of the report Research context 2.1 2.2 Background Research objectives 1 5 5 12 14 14 15 22 25
Introduction 3.1 3.2 3.3 Why consumer/citizen engagement? The axes of engagement Consumer/citizen engagement in New Zealand
Overview of analysis framework Case studies: An in-depth guide to consumer/citizen engagement mechanisms Elements of effective consumer/citizen engagement 6.1 6.2 6.3 6.4 6.5 Principles for effective engagement Representation in participation and engagement Consumer/citizen engagement and disadvantaged/special needs communities Māori and engagement and participation e-Participation
27 99 99 101 104 106 107 109 110 112 114 117 120 120 124 125
Conclusions and implications 7.1 7.2 7.3 Mechanisms for citizen engagement What is missing? Recommendations for PHARMAC
Appendix A: Glossary Appendix B: Bibliography Case studies In-text references Websites
1
OVERVIEW OF THE REPORT
This piece of desk research was designed to inform the development of PHARMAC’s approach to consumer/citizen engagement. Conducted between January and June 2009, this Review
has incorporated information from academic literature, reports published by government agencies, and reports available from consumer organisations and interest groups, to bring together international examples of consumer/citizen engagement from the health sector and beyond. It has collated a series of 21 Case Studies to explore different engagement
mechanisms currently in use, their purpose, strengths, weaknesses and outcomes achieved. As a result, this will assist PHARMAC to make an informed decision about how to develop their approach to consumer/citizen engagement in the context of health system decision-making; feeding closely into PHARMAC’s identified strategic priority of ‘improving stakeholder relationships and engagement’ and actions arising from the Actioning Medicines New Zealand document.
Traditionally, governments have approached interacting with their citizens through the means of information provision and consultation. While each is effective in different circumstances, governments around the world have begun to recognise the importance of consulting with and engaging their citizens and consumers in more meaningful and constructive ways. PHARMAC commissioned the Ipsos-Eureka Social Research Institute to undertake a Review of the literature (academic and non-academic) to examine emerging trends in consumer/citizen engagement. Overall, the aim of the Review is to identify and evaluate mechanisms for
seeking and incorporating consumer/citizen views in order to define best practice in citizen engagement. In commissioning this Review, PHARMAC is seeking to increase its understanding of consumer and citizen engagement and participation practices throughout the world, with the view to improving how it goes about practising consumer and citizen engagement going forward. This aim is consistent with Medicines New Zealand, New Zealand’s medicine strategy (which
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contributes to, among other outcomes, better participation and independence for New Zealanders). The strategy recommends PHARMAC encourage stakeholders, including
consumers, to provide their views on medicines funding applications and advise consumers on how they can engage with PHARMAC. PHARMAC’s aim to improve consumer/citizen
engagement also supports the actions set out in the Responses and Actions document produced following the 2007 PHARMAC Forum, as well as PHARMAC’s Statement of Intent. The Review has adopted a Case Study approach to reporting different consumer/citizen engagement mechanisms. Most of the 21 Case Studies presented herein (Section 5) focus on the health setting and involving consumers/citizens in decision-making. Whilst only a few are examples from New Zealand, the majority are examples from around the world, including the United States, the United Kingdom, Canada, Norway, Belgium, Brazil and Australia. We have chosen to focus on less ‘traditional’1 forms of participation, as we consider there is more to learn from examining less-traditional and some more innovative and emerging techniques (such as deliberative events, citizens’ juries, and online forums). An overview of the 21 Case Studies is set out in the table below:
Case study
Title and year completed
Country
Engagement mechanism
1 2 3 4 5
Bioethics Council – the Prebirth Testing Project (2007) NZ Families Commission – Out of School Services (2007) Ceredigion NHS Trust (2006) Swansea NHS Trust – Editorial Board (2004 – ongoing) CaliforniaSpeaks – The Public Weighs on Current Health Care Reform Proposals (2007) National Road Safety Committee – Road Safety to 2010 Workshops and Online Community Forums (2006) Participatory Budgeting (1989 – current) Consumer-Designed Service Information Hubs
New Zealand New Zealand Wales Wales United States
Deliberative events and online deliberative forums Face-to-face consultation meetings and online panel Patient stories (through depth interviewing) Citizens’ editorial board Large scale simultaneous deliberative events Community workshops and an online forum
6
New Zealand
7 8
Brazil Australia
Participatory budgeting workshops Consumer/citizen research undertaken by a Consumer Reference Group
1
Such as making submissions to a review, attending a ‘town hall’ meeting or attending a focus group discussion.
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Case study
Title and year completed
Country
Engagement mechanism
9
Public Dialogue Sessions – Review of the Healthcare System NICE Citizens Council (ongoing) Citizens Workshop adopting the CHAT (Choosing Healthplans All Together) tool (date not specified) The Bristol Citizens’ Jury (2006) Consumer Participation in Accreditation – Consumer Surveyors (2000-01) General Report on Poverty – Social and Political Dialogue (1994)
Canada
Public dialogue sessions
10 11
United Kingdom New Zealand
Citizens Council Citizens workshops / elements of budget-setting workshops Citizens’ Jury Consumer surveyors
12 13
United Kingdom Australia
14
Belgium
Targeted consultative meetings with members of the community from disadvantaged backgrounds, associations that represent them and government bodies Dialogue sessions
15
ChoiceWork Dialogue – the Future of Healthcare in Canada (2002) Calculating QALYs: Societal versus Patient Perspectives (2000) Deliberative Opinion Poll on Healthcare Ethnic Community Stakeholders as Partners in Primary and Secondary Diabetes Prevention (2003) Consensus Conference addressing Genetically Modified Food (1996) e-Participation: Department of Foreign Affairs and International Trade Website Standards New Zealand
Canada
16
United States
Depth interviews
17 18
United States Australia
A series of deliberative polls A representative stakeholder committee and focus group discussions Consensus Conference
19
Norway
20
Canada
Online forums
21
New Zealand
Standards Development Committees and public comments process
In addition to exploring mechanisms for consumer/citizen engagement, the report also presents information regarding the history and practice of consumer/citizen engagement and information regarding consumer/citizen engagement in the New Zealand context (Sections 2 and 3). It also incorporates a chapter addressing key trends emerging in consumer/citizen engagement and a
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summary of views on how to conduct effective consumer/citizen engagement (Section 6). Lastly, Section 7 of the report draws together the findings set out in earlier sections, setting out key conclusions and implications for PHARMAC.
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2
RESEARCH CONTEXT
2.1 Background
acknowledges that its various stakeholders often have differing priorities.
PHARMAC
Pharmaceutical companies are driven by profit whereas PHARMAC’s concern is getting the most out of a limited budget. Consumer groups may be focused on a particular area of health or medication where as PHARMAC has to consider the impact of its funding decisions on all New Zealanders - funding one medication may mean that another medicine may not be funded. These varying points of view mean there will not always be agreement; however, the purpose of improving stakeholder engagement is not agreement, but better understanding and therefore better decision-making.
PHARMAC’s strategy for external success
Public perceptions and public confidence are critical to PHARMAC’s organisational success due to the high profile nature of the work it does. In PHARMAC’s 2008-2009 Statement of Intent, the importance of consumer/citizen/stakeholder engagement is highlighted as a continuing priority and a driver of external success. PHARMAC’s External Mission – ‘To understand and to be understood’ is a challenging but important strategic priority for PHARMAC. PHARMAC’s External Mission – ‘To understand and to be understood’ - is to endeavour to do all it can to understand both its stakeholders’ views as well as for PHARMAC’s operations and perspectives to be understood by its stakeholders (stakeholders can include consumers and citizens). Strategies to support PHARMAC’s External Mission include the improvement of PHARMAC’s stakeholder relationships and its engagement with stakeholders. Initiatives in
place to improve citizen/consumer engagement within the organisation (discussed further in a later section) include the Consumer Advisory Committee (CAC), the annual PHARMAC Forum and improving engagement with District Health Boards (DHBs). The External Mission also includes improving communication capabilities within the organisation as it is believed all staff have a role in influencing people’s perceptions of PHARMAC. Improving communication and engagement skills allows PHARMAC to clearly understand stakeholder views so decision-making is based on the most comprehensive and inclusive sets of
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information possible. It is also important that PHARMAC’s processes, decisions and views are clearly understood by stakeholders as not all stakeholders’ expectations can be met. PHARMAC may not always agree with stakeholders but the ethos PHARMAC would like to communicate is ‘better understanding among stakeholders is ultimately good for everyone’.2 Below is a summary of the initiatives and activities outlined in PHARMAC’s Statement of Intent.
Summary of ‘External Mission’ Initiatives and Activities for 2008-2009:
Improve engagement with District Health Boards (DHBs): Memorandum of Understanding with DHBs; update DHBs on PHARMAC activity;
Improve stakeholder engagement: publish guidance for stakeholders to enable them to better contribute to the pharmaceutical process; publish improved public summaries of funding decisions; hold 2009 PHARMAC Forum; improve communications; develop centralised resource management system to allow access to PHARMAC resources.
Ensure optimal advice and performance of advisory committee: work with the Ministry of Health to review the Pharmacology and Therapeutics Advisory Committee (PTAC) appointment protocol; consult on the changes to the PTAC guidelines; implement changes to PTAC guidelines; consult on changes to the Terms of Reference of the CAC; implement changes to the CAC Terms of Reference.
2
PHARMAC (2007). PHARMAC’s relationships presentation by Acting Chief Executive Matthew Brougham.
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PHARMAC’s current consumer/citizen engagement initiatives and activities
There are a number of ways PHARMAC is already engaging with consumers and citizens. These are described in further detail below. Some of these activities have arisen from Medicines New Zealand, released in 2007. Other engagement initiatives and activities continue to arise from the PHARMAC Forum in 2007. PHARMAC’s current engagement mechanisms such as
consumer/citizen participation in the funding decision process and the Consumer Advisory Committee are also discussed below.
MEDIC INE S NE W ZEAL AND
The New Zealand Government released its strategy for the New Zealand medicines system, Medicines New Zealand, in 2007. The strategy aimed “to provide a strategic framework that supports sound decision-making over time”.3 A number of the actions that arose from
Medicines New Zealand fell in PHARMAC’s domain of responsibility. It is noted some of these actions correspond to feedback provided by stakeholders at the Forum and have also been addressed in the 2008-2009 Statement of Intent. The actions that concern
citizen/consumer/stakeholder engagement included: Holding regular forums for interested stakeholders to comment on PHARMAC’s operations and stakeholder engagement strategy (note that stakeholders include consumers/citizens). Meeting with funding applicants at the beginning of the funding decision-making process. Encouraging stakeholder (including consumer) input into funding applications for
consideration in the decision-making process. Publicising opportunities to provide this input, and guidance on how contributions to the decision-making can be put forward. Broad consultation on changes to the PTAC’s operational guidelines to ensure optimal arrangements are in place for the Committee to provide ‘free and frank’ advice to the PHARMAC Board. Review the Consumer Advisory Committee’s Terms of Reference.
3
http://www.moh.govt.nz/moh.nsf/indexmh/medicines-nz
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THE PHARMAC FORUM
The first PHARMAC Forum was held in December 2007. The forum involved 120 participants including representatives from patient and consumer groups, pharmacists, clinicians, the pharmaceutical industry, District Health Boards, the Ministry of Health and other Government agencies. The Forum involved small group discussions and workshops on three key topics: how to improve PHARMAC's relationships with stakeholders; how to improve the medicine funding process; and optimal use of medicines. The feedback from the Forum was summarised in the Responses and Actions document published by PHARMAC in July 2008. Key themes arising from the Forum were: make improvements to the pharmaceutical funding process; stakeholder input into PHARMAC’s work; optimal input from advisory groups; communication about the funding process; improved stakeholder relationships; and optimal use of medicines and reducing inequalities. In response to the feedback from the Forum participants, PHARMAC outlined five priority actions. These were: 1. 2. provide more information about PHARMAC and its activities improve PHARMAC’s consultation processes to assist people to contribute to the funding process 3. getting out and about more – engaging more often with stakeholders using face-toface mechanisms 4. 5. improving how PHARMAC gets advice from their clinical and consumer committees improving understanding of the budget setting and budget management processes
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As mentioned, the initiatives to address these priority actions have been addressed in the PHARMAC’s 2008-2009 Statement of Intent and relate back to PHARMAC’s external mission ‘to understand and to be understood’. Plans are to hold the next PHARMAC Forum in 2009.
SUBMISSION S AND PROPOSALS
Actions arising from Medicines New Zealand as well as the PHARMAC Forum included PHARMAC providing more information on the funding decision-making process and how
consumers/citizens could participate in this process. These actions have been addressed through information covered by the PHARMAC information sheets, an improved explanation of the decision-making process on the PHARMAC website, as well as PHARMAC’s Having your say in our decisions document. Although most funding applications are made by pharmaceutical companies, anyone (patients, consumers, doctors etc.) can make a submission for a medicine to be listed on the Pharmaceutical Schedule. The most common method in which citizens/consumers can
participate in the funding decision-making process, however, is through making a consultation submission. PHARMAC regularly publicises opportunities to make submissions with consultation periods usually lasting approximately two weeks; although it should be noted that the timelines can vary depending on the circumstances of the individual decision. Further, topics with high
public interest are usually consulted on for a longer period. These submissions are typically made in writing and all submissions go to the PHARMAC Board for consideration. People can request to receive all consultation documents by signing up to PHARMAC’s consultation distribution list. All those who have made a submission will receive written notification of the outcome of the decision by the PHARMAC Board.
THE CON SUMER ADVISOR Y COMM ITT EE
The Consumer Advisory Committee (CAC) comprises nine members of the community, who have a mix of ages, gender and backgrounds. The CAC provides PHARMAC with information from the patient or consumer’s point of view. PHARMAC’s CAC members ‘represent interests broader than those of a specific group and demonstrate a connection to a particular community of consumers’4. Two of the members of the Committee must be of Māori descent and one of
4
PHARMAC Consumer Advisory Committee - Terms of reference for the Consumer Advisory Committee (CAC), http://www.pharmac.co.nz/2002/04/18/CAC_TOR.pdf
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Pacific Islander descent. The Committee meets at least two times a year and is guided by its Terms of Reference. As mentioned, the Terms of Reference for the CAC are to be reviewed in response to actions arising from Medicines New Zealand and the PHARMAC Forum.
MĀOR I RE SPON SIVEN ESS STRATEGY
PHARMAC’s consumer/engagement participation activities are undertaken in the context of PHARMAC’s Māori Responsiveness Strategy (Strategy). While access to subsidised medicines is the same for all New Zealanders, research has found that the prescribing and uptake of subsidised medicines among Māori is lower. To address this, PHARMAC, in consultation with the Māori community, developed the Strategy to increase the uptake, prescription, utilisation and optimal use medicines by Māori. The 2007 – 2012 goals for the Strategy are: 1. Integrate Māori strategic priorities. 2. Enhance internal PHARMAC capability in relation to Māori Health issues. 3. Improve the quality of data analysis in relation to Māori Health. 4. Prioritise Māori health priority areas in Funding & Procurement. 5. Advance Optimal Use of Medicines for Māori. 6. Ensure significant Māori representation and participation within PHARMAC.5 As part of implementing the Strategy, PHARMAC has also undertaken a number of steps to better understand the needs of the Māori community including employing Māori personnel with specialist skills and experience. A number of the Optimal Use initiatives such as One heart, many lives and the Māori use of medicines program include engagement mechanisms such as the provision of training material, partnerships with local health providers and organisations and the provision of relevant information specifically for the Māori community.
PHARMAC (n.d) Te Whaioranga Maori Responsiveness Strategy overview, Accessed 21 May 2009 from http://www.pharmac.govt.nz/2008/12/12/Te%20Whaioranga%20Maori%20Responsiveness%20Strategy%20overview.p df
5
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ACCESS AN D OPT IMAL USE CAMPAIG NS
The Access and Optimal Use Campaigns conducted by PHARMAC as part of the promotion the responsible use of medicines are not only developed for the Māori community. Information about the responsible use of medicines is also targeted to health professionals as well as citizens/consumers. Some of the access and optimal use campaigns developed include: Antibiotics - Wise Use of Antibiotics; One Heart Many Lives; Gut Reaction; Diabetes - Staying Well with Type 2 Diabetes; Gout; My Medicine Looks Different; and Space to Breathe - Childhood asthma campaign. There is often a high level of involvement by stakeholders such as consumers/citizens, health professionals and District Health Boards in the development and implementation of these campaigns. For example, with the Space to Breathe Asthma campaign, feedback was sought from 160 general practitioners, as well as parents of asthma sufferers, to help shape the strategy.
PHARMAC WEBSITE
One way consumer/citizen engagement in the form of information provision is facilitated is via the PHARMAC website. Sections of the PHARMAC website are catered to its various stakeholder groups. The ‘Patient and Consumer’ section covers information such as the Pharmaceutical Schedule, medicine information, the decision-making process, Māori Health, media releases and how consumers/citizens can have their say in the decisions made by PHARMAC. PHARMAC produces a number of information sheets covering a variety of topics which are also available via the website. Among the topics covered in these two page documents include PHARMAC’s background and history, where it fits in the health system, the work they do and how citizens/consumers can get involved in the decision-making process. Information on how people can provide feedback to PHARMAC via email, fax or telephone is also provided on the website.
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CONSUMER/C IT IZE N FEEDBACK
Feedback is a two way process. PHARMAC regularly receives consumer/citizen feedback via mail, fax, their toll free telephone number and replies to this feedback including further information in the form of the information sheets where relevant. Questions about medicines funding issues (including brand changes) are often fielded by PHARMAC via the toll free number.
MEET ING S WITH CO NSUMER S
From time-to-time, representatives of PHARMAC are invited to attend meetings with consumers and consumer groups to discuss PHARMAC's role in the health system as well as other topics. To gain a better understanding of the ‘other side of the equation’ PHARMAC also invites consumers to come and speak with PHARMAC staff about their experience of their condition(s).
2.2
Research objectives
Overall, the aim of this project is to identify and evaluate mechanisms for seeking and incorporating consumer/citizen views in order to understand what defines best practice in citizen engagement. Specifically, the Review will incorporate information from academic literature, reports published by government agencies, and reports available from consumer organisations and interest groups. The Review will: focus on citizen/consumer engagement theory and practices in the health sector as a priority area, although examples could be sourced from other sectors if the research team deems it relevant and appropriate for PHARMAC; incorporate examples primarily from the public sector, but include examples from the private sector, wherever applicable; explore available resources regarding how consumer/citizen engagement has been used in the development of policies relating to QALY measures; examine how consumer/citizen engagement has been used as an input to strategic decision-making; and make a note of work addressing in what circumstances consumers/citizens actually want to engage.
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In reporting the findings of the Review, emphasis will be placed on how PHARMAC could best use the tools/techniques identified, including identification of critical success factors for each technique in PHARMAC’s unique operating context.
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3
INTRODUCTION
3.1 Why consumer/citizen engagement?
Traditionally, governments have approached interacting with their citizens through the means of information provision and consultation. While each is effective in different circumstances, governments around the world have begun to recognise the importance of consulting with and engaging their citizens and consumers in more meaningful and constructive ways. Broader
trends in society over the last few decades are thought to have contributed to the rise of enthusiasm for involving members of the public in a more direct fashion as a way to strengthen the system of representative democracy. The most important trend has been a universal decline in trust of politicians and organisations, which has been observed around the world. As such, public entities are increasingly looking for ways to engage with their users and with the wider community in order to tailor services more closely to their needs; ideally maximising efficiency while ensuring positive societal outcomes. Governments have begun to appreciate that in order to best approach the many complex challenges facing society today, a new approach to understanding community priorities, beyond traditional means, is needed. Further, Curtain6 states that: ‘Citizens are also now more capable than ever to engage in policy making. As has been noted in relation to Canadian citizenry, they are better educated, more diverse and less deferential that any previous generation. Citizens worldwide are seeking more direct ways to get involved in public life and decision-making, particularly on issues in which they have a particular interest.’
6
Curtain, R. (2003). What Role for Citizens in Developing and Implementing Public Policy? Part 1. Downloaded on 13 December 2007 from http://www.curtainconsulting.net.au/download_controlled/Public%20policy/Curtain_CitizenEngagementPart1.pdf
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There is already a significant body of work which looks at citizen engagement and best practice internationally and across the range of public sector organisations including healthcare. Consequently there are many organisations (NGOs, private companies etc.) set up across the world who give opinions on public engagement and offer mechanisms through which it can be facilitated. The public sector has experimented with involving the public in many types of decisions from priority setting through to service design, as well as in co-delivery of outcomes and evaluations (particular examples of how this has been done will be explored Section 5 of this report). A particular challenge in this field is lack of formal evaluation of consumer/citizen engagement practices. In particular, it is common to find that different mechanisms for engagement have been tried and tested but never formally evaluated. As a result, there are many mechanisms which exist, and can be discussed, but for which there is very little hard evidence for what outcomes are achieved. Although practitioners are keen to espouse the value of the mechanisms that they have developed they generally find it difficult to point to written evidence of the impact or outcomes (this is further addressed in Section 6 of this Report).
3.2
The axes of engagement
The concept of involving the public in decision-making per se is relatively new and is developing at a very fast rate. As it develops, the terminology used to describe what is
happening/desirable also alters. One of the key complaints from practitioners responsible for involving the public is the myriad of terms used and the lack of clarity in their meaning. There are a number of terms that are sometimes used interchangeably but for others have subtle but distinct meanings. In this section we introduce some of the key terms used, their
interpretation and implications.
Who?
An important question is who an organisation is trying to engage and why. There is not necessarily a right or wrong answer but it is important to be clear in order to ensure that appropriate engagement mechanisms are chosen and research questions (if appropriate) are framed correctly. Citizens: Includes both service users and non-users. Generally, if people are invited to contribute as citizens the intention is for them to leave behind their individual needs/desires and to help to identify the ‘common good’. (Service) Users/Patients: Existing and past users of a service who will have a particular perspective having seen ‘the system’ in action. Generally they are treated as ‘lay experts’ or experts in the patient experience.
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-
Consumers: A term that has emerged in the past 10-15 years within the public sector, reflecting the desire for public services to learn from the private sector. The subtle semantic difference indicates a significant underlying change in mindset, whereby public services are expected to become more aware of their users’ needs and to tailor services accordingly (as would be required in the private sector for a company to remain competitive).
-
Public: Potentially a less value laden term, but generally not used with the prevision of the others. Public is used relatively generically to apply to a range of audiences.
A glossary of frequently used terms used in consumer/citizen engagement is provided at Appendix A.
How?
There is a wealth of terminology associated with this field: participation,
involvement, engagement, empowerment, collaboration. and The
different terms have overlapping interpretations meanings. and In
• Inform: provide the public with balanced and objective information to assist them in understanding the problem, alternatives, opportunities and/or solutions • Consult: obtain public feedback on analysis, alternatives and/or decisions • Involve: work directly with the public throughout the process to ensure that public concerns and aspirations are consistently understood and considered • Collaborate: to partner with the public in each aspect of the decision including the development of alternatives and the identification of the preferred solution • Empower: to place final decision-making in the hands of the public
particular, the terms are often associated with different levels of power ceded to the participants. There are various ways in which public participation - and community engagement - can be conceptualised. The ladder of participation developed by David Wilcox and based upon the
work of Sherry Arnstein (see boxed text) is a useful way to start to understand the different types, although critics have suggested that the ladder implies a hierarchy whereas in fact different levels of power exchange are appropriate in different situations. Engagement tends to be used as a catch-all term which encompasses involvement, collaboration and empowerment (but not usually informing or consulting which are viewed as one-way processes rather than two-way dialogues). The International Association of Public Participation (or IAP2) has developed one framework for understanding different levels or forms of public participation, based around Wilcox’s ladder of participation. Each of these ‘types’ of participation has a different goal with respect to public
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participation and can be seen to afford the public with differing degrees of ‘power’ or control in the participation process (with empowerment giving the public the highest degree of power, by giving the public decision-making capacity, and informing the lowest). In addition, each of the different types of participation may be achieved through adoption of different participation tools and techniques (IAP2 have included some examples). It is worth noting that the The examples of
categorisations below are fluid – they are neither exclusive nor final.
techniques provided are for illustrative purposes only – the reader should not necessarily interpret that all focus groups, for example, can only be considered as ‘consulting’. The level of public impact reached will depend on a combination of the selection and form of the techniques or tools adopted, as well as how the information attained is actually used and considered. In
this context, it is also worth noting that PHARMAC’s own Consumer Advisory Committee, for example, does not operate strictly at a collaborative level, as this table would suggest. Figure 1: IAP2 Public Participation Spectrum
(© 2004 International Association for Public Participation)
Increasing level of public impact
INFORM
CONSULT
INVOLVE
COLLABORATE
EMPOWER
Public participation goal: To provide the public with balanced and objective information to assist them in understanding the problems, alternatives and solutions Promise to public: We will keep you informed We will keep you informed, listen to and acknowledge your concerns and provide feedback on how public input has influenced the decision We will work with you to ensure that your concerns and aspirations are directly reflected in the alternatives developed and provide feedback on how public input influenced the decision We will look to you for direct advice and innovation in formulating solutions and incorporate your advice and recommendations into the decisions to the maximum extent possible We will implement what you decide To obtain public feedback on analysis, alternatives and/or decisions To work directly with the public throughout the process to ensure that public concerns and aspirations are consistently understood and considered To partner with the public in each aspect of the decision, including the development of alternatives and the identification of the preferred solution To place final decision-making in the hands of the public
Example techniques to consider: Fact sheets Websites Open houses Public comment Focus groups Surveys Public meetings Workshops Deliberative polling Citizen Advisory Committees Consensusbuilding Participatory decision-making Citizen’s juries Ballots Delegated decisions
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Why?
As well as understanding who has been involved, and how, it is also very important to understand why. Historically, four key drivers have been identified for increasing public involvement: •
Strengthening democracy – legitimising decisions made by government by involving
people in more detailed aspects of planning and delivery (and utilising new technology to make getting involved easier from the perspective of the decision-maker and the public). •
Developing better and more responsive services
– ‘decentralisation’ and
‘devolution’ have been key buzz words, particularly in the UK, as service-delivery has shifted to being more customer-orientated. Users of services often have insight into the strengths and weaknesses of delivery which can be utilised to improve services. •
Developing social capital – increasing social capital, and ideally developing a sense
of active citizenship can be important for individuals but can also have positive effects for society as a whole. By involving the public in decision-making they can be encouraged to take more responsibility (e.g. in the Expert Patient program developed in the UK), thus reducing the burden on public service. •
Economic development – particularly in the developing nations, NGOs have
frequently used involvement techniques in order to inform their lobbying. This has been a key driver of the development of new public engagement mechanisms, particularly in societies where citizens have not traditionally had a voice. Specifically, this project is focussed on health system decision-making. Therefore the emphasis is likely to be on the first and second drivers, although examples designed in response to the other drivers may also be of interest, at least for comparison purposes. Methods of consumer/citizen engagement and participation have the potential to bring many benefits: They emphasise the role of citizens as agents of social change, thus increasing the chances of community ‘buy in’ and advocacy. They allow for the provision of local knowledge about what works, what does not, and what is likely to work in future, through in-depth exploration of public policy proposals and the partnered development of solutions. They provide for more detailed exploration of issues than would be achieved through traditional research methods, as citizens are able to take the time to consider issues and
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scenarios in detail - citizens become more involved, as they debate and explore different perspectives and possibilities. They provide for the exploration of the separate, yet intertwined, perspectives of the citizen/community member, taxpayer, and consumer, and what they expect from government. They send the message that government is serious about listening and involving members of the public in the processes of policy development and service improvement. Furthermore, with engagement comes significant benefits in terms of consumer/citizen education. In this case, education creates an understanding of the variables and of the
challenges inherent in government decision-making processes; things which may not be visible in a simplified flow-chart or description of how an organisation makes decisions. By providing access to their methods and encouraging participation by consumers, organisations like PHARMAC can both empower consumers and encourage empathy with their decisions, due to the high degree of transparency they may provide. It is important to note that some critics of consumer/citizen engagement argue that that such activities undermine democratic structures, which incorporate Members of Parliament who have been elected as representatives of the citizens in their electorate (for example, the former Australian Federal Health Minister, the Hon Tony Abbott MP, criticised the usefulness of citizens’ juries, arguing they are no substitute for political decision-making and that politicians and policy makers ‘can’t subcontract out the decision-making process’7). As noted by the OECD
(cited by the Australian Capital Territory Government in their paper Citizen Centred Governance8), ‘highly educated, well-informed citizens expect government to take their views and knowledge into account when making decisions’. Rather, we view consumer/citizen
engagement as an enhancement, rather than a replacement, of traditional representative democracy – it is a tool to assist governments to be better decision-makers. The OECD goes on to report: ‘Access to information, consultation and active participation in policy making contributes to good governance by fostering greater transparency in policy making; more accountability through direct public scrutiny and oversight;
7 8
http://cpd.org.au/article/citizens-juries-please-say-yesminister http://www.cmd.act.gov.au/__data/assets/pdf_file/0004/2659/citizen_centred_governance.pdf July 2008
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enhanced legitimacy of government decision-making processes; better quality policy decisions based on a wider range of information sources; and finally, higher levels of implementation and compliance given greater public awareness of policies and participation in their design’.9
LIM ITAT IO NS TO CON SUMER/C IT IZEN ENGAGMEN T
Although consumer/citizen engagement can be used as an effective tool to enhance government and public sector decision-making processes, there are limitations to
consumer/citizen engagement that decision-makers and policy-makers should bear in mind. Firstly, governments and their agencies may have limited scope to offer decision-making power to consumers/citizens. Most consumer/citizen engagement mechanisms provide
consumers/citizens with the opportunity to input into government decision-making, to differing degrees, although the final decision rests with government. However, the fifth category on the IAP2 spectrum (as presented on page 17), empowerment, involves delegating some or all decision-making power to the consumers/citizens participating. This is less common in practice and it is hypothesised this is largely due to the fact that many government agencies, under legislation, are not legally authorised to give their decision-making abilities to citizens. Indeed, in many instances, it could be said that citizens may not want to be given that level of power, seeing it as the role of government to have the final say with decisions that are being made on citizens’ behalf.
Secondly, many government agencies, whilst encouraged to be transparent and accountable to the public, undertake many decision and policy making processes which involve information which is confidential in nature. As such, a consumer/citizen engagement process may not be appropriate in such circumstances. Thirdly, consumer/citizen engagement, depending on the mechanism adopted, can often require substantial resources. In a sector where funds are
limited and governments and agencies have multiple programs and priorities competing for those funds, it is important to consider ways in which consumer/citizen engagement can be undertaken cost effectively.
Lastly, some criticism of particular consumer/citizen engagement mechanisms had been made regarding difficulty in attaining a ‘representative’ cross-section of the population of interest. This issue is further explored in Section 6.
9
Ibid.
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What?
Citizen engagement is a very broad field. There are a wide range of ways in which the public can become more involved in public services and their delivery. Below we have segmented these into four broad categories: •
Strategic planning - taking an overall view of the service, identifying priorities and
setting objectives. For example, setting overall health outcome targets, policy design or the design of a decision-process. •
Service design - looking at the detailed aspects of service delivery and developing a
streamlined, effective service which will meet user needs. Examples could include how a service is delivered or how a budget is prioritised. •
Delivery - involving the user in the delivery of the desired outcomes. This can include
processes such as expert patient programs where people living with long term conditions are able to take greater control of the care they receive. •
Evaluation - involving people in the evaluation of programs or services against set
objectives. This can include monitoring patient experience but also more active involvement including citizen assessors or lay members of evaluation panels.
When?
There is also considerable discussion about when is the most appropriate time to involve the public. The most common approach is public engagement through consultation whereby the majority of the thinking has been done, ideas have been developed and the public is asked to respond to the proposals that have been developed. However, involving the public earlier can also have value in identifying the issues of key importance to them and consequently tailoring proposals from early in the process.
Implications
A useful way to think about the ways these terms combine is as a series of axes. The ‘who’ axis may have just two states – user or citizen, whereas other axes are more of a continuum (e.g. how or when). Used together the above axes can be used to carefully define and describe a particular engagement mechanism. When evaluating mechanisms it is useful for the objectives to be framed carefully in terms of the above and then the outcomes can be evaluated against these. In particular, it is important not to judge a mechanism designed to consult the public using criteria for an empowerment mechanism or vice versa, or to evaluate a user involvement mechanism in terms of how well it reflects the views of the public as a whole. Our framework for examining the case studies set out in Section 5 of this report is based around these axes.
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3.3
Consumer/citizen engagement in New Zealand
The policy background
Increasingly, participation and engagement are being promoted across government as a way to achieve better services and better outcomes. According to the Office for the Community and Voluntary Sector, ‘Active and effective relationships between government and community, voluntary and Māori organisations can: Improve the quality of policies and services Help solve complex problems Build trust and understanding Support active citizenship Ensure Māori participation Help create an inclusive society Measure progress more effectively Build staff skills’
In particular, the Office states ‘Government agencies must take action both at the planning level and in their day-to-day activities to involve community members in policy-making and service delivery.’10 The Statement of Government Intentions for an Improved CommunityGovernment Relationship is also directly relevant. The document outlines the government’s commitment to building strong and respectful relationships with the community and voluntary sector. The development of organisations such as District Health Boards in New Zealand, designed to ensure services are tailored to local community needs, are an indication of the level of commitment to the engagement agenda which has existed for a number of years.
Challenges in the New Zealand context
While it is important to consider international best practice in engagement and empowerment, it is also vital to recognise the particular cultural and geographic challenges faced in the New Zealand context. There are a number of key features of the New Zealand population which will shape the kind of engagement approaches that are both relevant and appropriate for PHARMAC to consider. The first unique aspect is the Māori population. In the 2006 census, more than one in seven people were counted in the Māori ethnic group, the majority of who live in the North Island. Ideally, all people should be able to have a say in government decisions that affect them and
10
http://www.goodpracticeparticipate.govt.nz/
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Māori people are no exception. Māori, as tangata whenua (people of the land), have a unique relationship with government. The Treaty of Waitangi obliges government to ensure that Māori are involved in making decisions on matters that affect them. It also means that government must take positive steps to ensure that Māori interests are protected. Despite the best efforts of government, Māori people remain statistically more likely to be economically and socially excluded. For example, in 2006, 60.1% of the Māori ethnic population over the age of 15 had a qualification, compared to 75% of New Zealand residents as a whole. Also, there is a significant disparity in incomes: the 2006 census showed the median Māori income is $20,900, nearly $5,000 lower than people identifying themselves as European and $10,000 lower than those of ‘other ethnicity’ including those identifying themselves as New Zealanders. Such indicators are particularly important as lack of education, confidence and skills in themselves can prevent people from being willing to engage and consequently increase the onus on an organisation to ensure mechanisms are designed on citizens’ own terms. In addition, when working with Māori people it is vital to consider kawa (protocols) and tikanga (customs) and ensure that these are respected. Secondly, there are a number of immigrant populations living in New Zealand with a range of different needs. Pacific Communities are a key example, but also other ethnic communities living in New Zealand (Chinese, Indians, Latin Americans, Greeks, Koreans, Arabs, Somalians, Iranians, South Africans, Russians and many more). Again, it is vital that these people have a say in decisions that affect them, yet may not be able or willing to engage through generic approaches. Thirdly, it is important to consider those living in rural areas. New Zealand is more urbanised than many other nations; in 2002, 86 percent of its population lived in urban areas. This was similar to Australia (85 percent) and the United Kingdom (90 percent) but much higher than the United States and Europe (77 percent and 75 percent, respectively)11. However, those living in rural areas can have very different needs to those living in urban areas. Consequently it is vital that engagement mechanisms are designed to facilitate the involvement of people from more remote areas. In addition to these specific challenges, when choosing to engage it is vital to design a strategy which is inclusive and enables all key stakeholders to have a say. This will include the minorities known to be marginalised but could also include ‘invisible’ minorities from carers of people with disabilities (and of course people with disabilities themselves) through to busy
11
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families with two working parents who simply do not have the time to engage. We know from previous research that although there is a high level of support for citizen engagement in theory, not everyone wants to be consulted all the time. Consequently the challenge for PHARMAC will be finding the balance – which issues is it important to consult on, and what would people prefer you to decide on their behalf?
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4
OVERVIEW OF ANALYSIS FRAMEWORK
In consideration of the objectives and scope of the Review as identified in Section 2 above, the research team has adopted the following framework for collation and analysis:
Establish parameters for desk research
Identify sources
Develop draft analysis framework
Collate relevant
documents and
reports
Read, note-take and analyse relevant materials Revise analysis framework
Identify gaps Write draft report Phase 1 Phase 2
Write final report Discussion of report
The key steps in the process were:
Collate the literature.
All literature was collated and entered into a comprehensive
database.
Review collated literature. The research team took notes and analysed material as they
read in order to maximise efficiency.
The report incorporates an ‘in-depth guide to
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consumer/citizen engagement mechanisms’ – a case study approach to analyse each mechanism has been adopted.
Identify gaps in the initial collation of reading. Following identification of gaps
(making reference to the research objectives), the project team undertook a second round of searching, collating and reviewing documents.
Reporting. Once the main gaps were filled (where possible), a draft report was produced.
Case studies were structured in a set format based around the key axes of engagement described in Section 3, agreed to by PHARMAC during the initial project workshop. A final report was prepared following feedback/comment from PHARMAC. Following from this, we returned to the process of seeking further literature, where necessary, and revisited our analysis in order to ensure that the final report fully achieves the project objectives.
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5
CASE STUDIES: AN IN-DEPTH GUIDE TO CONSUMER/CITIZEN ENGAGEMENT MECHANISMS
The following section sets out 21 case studies of where consumer citizen/engagement has been practised by government or private sector agencies. These are not a complete representation of the case studies we came across in our search of the literature, nor are they necessarily examples of ‘best practice’. Rather, the case studies presented herein are a snap shot of
examples which we thought were particularly relevant or interesting to PHARMAC. Many of the case studies presented herein focus on the health setting and involving consumers/citizens in decision-making. Whilst only a few are examples from New Zealand, the majority (16) are examples from around the world, including the United States, the United Kingdom, Canada, Norway, Belgium, Brazil and Australia. We have chosen to focus on less
‘traditional’ forms of participation (such as town hall meetings), as we consider there is more to learn from examining less-traditional and some more innovative and emerging techniques (such as deliberative events, dialogue sessions, citizens’ juries, online forums). Case studies have been structured around the axes of consumer/citizen engagement, as discussed in Section 3. In particular, the case studies address: Who participated/was engaged (i.e. citizens or consumers/service users?) How were they engaged? (informed, consulted, involved, collaborated with or empowered?) Why was participation or engagement undertaken? (to improve democracy, improve services, create social capital or for economic development?) What did participation or engagement address? (planning, design, delivery or evaluation?) When did participation take place in the policy or decision-making cycle? A description of the process or tool for engagement, including structure and content, objectives, type of information sought, selection of participants, involvement of different audiences (including disadvantaged or special needs groups), resources required, and
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strengths and weaknesses of the technique.
It should be noted that the estimates of
resources required are not exact costings, but are intended as a rough guide. Ipsos-Eureka strongly recommends PHARMAC undertake a formal and more detailed costing process should it wish to seriously explore any of the options presented. Key outcomes achieved. Relevance to PHARMAC. It is noted that some Case Studies are more detailed than others; the length of each Case Study is reflective of the information publicly available.
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Case study 1:
Project title Bioethics Council - The Pre-Birth Testing Project (New Zealand)12
1314
Overview of approach
Who? How? Inform
Citizens
X X
Service Users/Consumers Involve Collaborate Empower
Consult
Why?
Democracy
2
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning
Better services
Social capital
Economic development
1
Design
Delivery
Evaluation
X
When? Scoping ----
X ---------------------------------Fixed length
Decision made Ongoing
One- off Description of the process/ tool for engagement
Background:
X
The purpose of Toi te Taiao: New Zealand's Bioethics Council, is to: Enhance New Zealand's understanding of the cultural, ethical and spiritual aspects of biotechnology. Ensure the use of biotechnology has regard for New Zealanders' values.15 During pregnancy, a woman and/or her unborn child can undergo a number of pre-birth tests which can include common procedures such as blood tests, ultrasounds, scans, or amniocentesis. Other more specialised pre-implantation genetic diagnosis can also be undertaken where embryos outside of a woman’s body (through IVF) can be tested for various conditions or illnesses.
Toi te Taiao: The Bioethics Council, (2008), Who Gets Born? A report on the cultural, ethical and spiritual aspects of pre-birth testing by Toi te Taiao: the Bioethics Council, Accessed 24 February 2009 from http://www.bioethics.org.nz/publications/who-gets-born-jun08/who-gets-born-jun08.pdf 13 Toi te Taiao: The Bioethics Council, (2008), Online Deliberation Who gets born? Pre-birth testing 26 March 2008, Accessed 25 February 2009 from http://www.bioethics.org.nz/publications/online-deliberation-who-gets-bornmar08/online-deliberation-who-gets-born-mar08.pdf 14 Toi te Taiao: The Bioethics Council, (2007), Who Gets Born? Pre-birth Testing Choicebook, Accessed 25 February 2009 from http://www.bioethics.org.nz/publications/pre-birth-testing-choicebook-oct07/pre-birth-testing-choicebookoct07.pdf 15 Toi te Taiao: The Bioethics Council, (2008), Our Purpose, Accessed 24 February 2009 from http://www.bioethics.org.nz/about-us/our-purpose.html
12
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In 2007, the legislative and policy framework concerning pre-implantation gene diagnosis (PGD) was due for review by the New Zealand Government. In light of the forthcoming review, the Bioethics Council conducted a nation-wide public deliberation to gain feedback on the sensitive, broader issue of pre-birth testing, on which their recommendations to government would be based.
Summary:
The pre-birth testing citizen engagement project involved a series of 18 public deliberative events and a parallel online deliberative forum. Prior to these events, 11 depth interviews with experts, a review of literature, and six ‘framing’ workshops with citizens were also conducted to generate ideas for discussion in the deliberative events.
Structure and content:
Issues framing meetings: The meetings were intensive day-long sessions with 810 participants and a facilitator. A number of Council members were also in attendance. Participants were sent a brochure as well as a set of questions on pre-birth testing to complete and ask five friends, relatives and colleagues. Through facilitated discussion, participants were asked to group their views as well as the views of the other people they had spoken to regarding attitudes towards pre-birth testing. The participants were asked to come up with approaches that decision-makers could take in regards to pre-birth testing. For each point of view, participants were asked to identify the potential benefits, drawbacks, consequences and trade-offs. As a result of these framing meetings, Choicebook, a booklet outlining these key themes was published. Choicebook was published for laypeople and included information on the scientific, ethical and social aspects of pre-birth testing. Choicebook was used to inform the faceto-face deliberative participants as well as becoming the basis of the online deliberative forums. In total, 56 participants took part in six meetings in Auckland, Wellington, Hawke’s Bay and Christchurch (including one meeting with Māori participants in Auckland, and one with Pacific Islanders in Wellington). Deliberative events: 256 people took part in the 18 events held in various locations nationwide (including three groups with Māori participants and one with Pacific Islander participants). These events were held during the day with an average of 14 people attending each three hour event. Prior to the events, participants were asked to read the Choicebook (developed out of the framing meetings) and again to speak to family and friends about prebirth testing. An opening welcome was given by a member of the Council and independent facilitators guided discussions around each of the four approaches towards prebirth testing listed in Choicebook. Areas discussed included the advantages, disadvantages, costs, conflicts or tensions and consequences of each approach. The goal throughout the day was to work towards an agreement on as many aspects as possible. Where the topic of pre-birth testing was unfamiliar, the discussions focused on how to raise awareness rather than working on recommendations for policy development. Online deliberative forum: The online deliberation was designed to closely follow the structure of the face-to-face public deliberative events. There were three parts to the online deliberation: the online version of Choicebook (including agree/disagree questions on each approach) (n=406 started the Choicebook exercise although not all completed all questions. Only n=281 completed the last question)
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sharing personal stories or ideas on pre-birth testing (64 stories and ideas), and participation in online deliberation forums (n=58). Participants were required to complete Choicebook before being able to participate in the online deliberative forum. The purpose of the online version of Choicebook was to allow participants to reflect upon their own views and prepare participants for the online discussions - not measure the extent to which they agreed or disagreed to each approach. The online Choicebook exercise also included an element of budgeting with a priority-setting task where participants were given $400M ‘People dollars’ and asked to decide how much of this they would allocate to each of the approaches covered in the Choicebook. The Council held three online deliberation groups each lasting approximately three weeks. Participants were asked to contribute daily to the moderated discussions. Fifty-eight people were selected to take part in this part of the online deliberation based on their responses to the Choicebook, as well as various demographic variables to ensure a balanced group of opinions. Throughout the period, facilitators would raise thought provoking questions, and write up daily summaries of the discussions. Anyone who wished to observe the group discussions could do so anonymously. Objectives The objectives of the pre-birth testing deliberation project were to: Increase the public’s general awareness of issues related to pre-birth testing, primarily through the media and Council communications initiatives; Raise awareness and understanding among participants of pre-birth testing issues and possible policy approaches to this question; Obtain informed and useable input that would help shape the Council’s recommendations to Government on pre-birth testing; Develop the Council’s internal capacity and skills in the areas of public deliberation, both online and in-person; Increase the perceived value of deliberative approaches, both within the Council and by third parties (e.g. government, policy and decision makers, the general public, the media); and Establish the foundation for an ongoing dialogue between and amongst the Council and interested individuals on the issue of pre-birth testing and other bioethics issues.16 Information sought The end goal of the research was to “ensure the views and values of New Zealanders were reflected in the recommendations made by the Council to the Government – while ensuring these recommendations were just, reasonable and practical”.17 The information sought at each of the key components of the public engagement is summarised below:
Issue framing meetings: To identify key issues related to pre-birth testing and
16
The Challenge for the Bioethics Council and the Role of Public Participation, http://www.iap2.org/associations/4748/files/08CoreValues_BioEthicsCouncil.pdf.pdf 17 Ibid
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to create a document summarising these issues.
Deliberative events and online deliberative forums: Contributions to and recommendations for future policies.
An independent evaluation of the deliberative process (including the framing meetings and deliberative events) was also undertaken. Questionnaires were distributed and telephone interviews were conducted with participants on the process, organisation of and motivations for attending the events. The evaluation of the framing meetings proved to be very beneficial with recommendations used to improve how the face-to-face deliberative events were to be run. Improvements included better preparation and training of facilitators in the techniques and information on pre-birth testing. Selection of participants
Issue framing meetings: The Bioethics Council asked for members of the public to register their interest in taking part in a public dialogue around prebirth testing through their website. Government and non-government organisations were also asked to publicise the event. Deliberative events: Participants were again sourced from the Council’s database of people with an interest in pre-birth testing. NGOs, organisations and community groups also helped with recruitment. In some areas, participants had responded to newspaper advertisements placed in the local papers. Online deliberative forums: Emails were sent to those who had registered their interest in taking part in discussions on pre-birth testing. Interest in joining the discussion on pre-birth testing was also generated through a magazine article in a leading publication and advertisements on a popular online auction website. Participants from the deliberative event were also informed of the online discussions.
Overall, participants were mainly women (80% of deliberative event participants and 74% of those who completed the online Choicebook). This could be attributed to the timing of the sessions as well as the fact that the community organisations used to help recruit participants (kindergartens etc) were ones where women are more active. Involvement of different audiences Participant feedback from the evaluation of the deliberative process included how they valued the opportunity of open dialogue with people with different views to their own. It was also a good opportunity to hear the perspective of minority groups. Both the Māori and Pacific Islander communities were involved early on in the consultation process with framing meetings held with each of these groups. One of the four approaches uncovered in the framing events which was discussed throughout the deliberative process was titled Tangata Whenua (People of the Land) – which prompted discussions on the importance of Māori values and the Treaty of Waitangi when developing policies on pre-birth testing. Of the 18 deliberative events, three were held solely with Māori participants and one with Pacific Islander participants. The Council also contacted a number of community organisations, some of which included Rural Women New Zealand, Federated Farmers, Enable New Zealand, Māori Women’s Welfare League, New Zealand College of Midwives to ensure a wide representation of participants. Resources required
Framing meetings and deliberative events:
Facilitators – the evaluation showed that training and preparation in the subject matter and process was a critical factor to running the sessions successfully
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Venues and refreshments Production of information/literature for participants to read prior to the event Approx $7,000-10,000 per framing event (8-10 participants) Approx $10-15,000 per deliberative event (each with 14 participants) – note this is a small-scale deliberative event
Online deliberative forum:
The Bioethics Council outsourced this to a company that specialises in conducting online deliberations o This company converted the stimulus materials used in the faceto-face events to the online format Look and feel of online deliberative forum consistent with Bioethics Council branding
o
Promotion to encourage people to go to the relevant website Facilitators/moderators to summarise discussions and post topics for discussion Strengths and weaknesses Involvement of the community to identify the issues at the start of the engagement process. Consideration of views of Māori and Pacific Islander and other minority groups. Opportunity for those who missed out on the face-to-face events to contribute online. Geographic spread. Informed responses due to ‘homework’ given to participants. Online – longer timeframe to think about the topics (although participants thought that even this was not long enough). Potential for participants to consist of those interested in the issue through self-selection (although participants reported they felt a variety of viewpoints were represented in the groups). Expensive exercise to conduct such a comprehensive consultation. Complexity of topic meant many participants felt that there was not enough time to discuss the issues fully. Topic was a very complex issue which participants may not have thought about previously or one that is easy for people to make their minds up about – although the homework task would have helped to alleviate this. Outcomes The Bioethics Council analysed the participant feedback from the both the online and face-to-face deliberative events and developed a number recommendations to the Government. This report is publicly available on the Bioethics Council website. Upon delivery of the report, the Council was assured that there would be a formal response from Government to the report. Relevance to PHARMAC Engaging citizens/consumers on pharmaceutical expenditure related issues would mean there is a high likelihood that PHARMAC would meet with similar complexities in engaging with the public as the Bioethics Council did when conducting the pre-birth testing consultation. The pre-birth testing deliberative exercise is an example of involving citizens in
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the policy development process. In contrast with many public participation exercises, it included the public’s point of view from the early stages of the consultation including the views of Māori, Pacific Islander and other minority communities. This example of citizen engagement also involved a technical subject which required participants to carefully consider their own views on a subject they probably did not think about regularly if at all. It was not a topic that was easy to grasp and one that had many sides to the ‘argument’. However, it should be noted, deliberating on this complex topic was not beyond the capability of citizens due to the significant amount of preparation and education undertaken by the council to ensure participants were informed prior to taking part in the deliberation. The level of complexity also had implications on the event duration. Thinking of the trade-offs, advantages, and disadvantages of the various scenarios was a demanding task and although participants had been set a homework to discuss the topic beforehand, it is clear the issues would not be resolved in a couple of hours. One of the key benefits of deliberative events of this kind is the ability to allow participants time to ‘properly deliberate’, to consider their answers as well as the views of other participants. In this case, the online deliberative forum afforded participants even more time to discuss the complex issues surrounding this topic. Including an evaluation component of the actual consultation process is a worthwhile activity for PHARMAC to consider in undertaking consumer/citizen engagement practices.
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Case study 2:
Project title NZ Families Commission – Out of School Services (New Zealand)
18 19 20
Overview of approach
Who? How? Inform
Citizens Consult Involve
Service Users/Consumers Collaborate
X
Empower
X
Why? Democracy Better services Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
X
When? Scoping
X
----------------
X ----------------------
Decision made
One- off Description of the process/tool for engagement
Summary:
X
Fixed length
Ongoing
The Families Commission has a legislative mandate to consult families and to provide policy advice on issues that affect their interests. 21 In order to be able to provide the Ministry of Social Development information to develop the Out of School Services (OSS) Five Year Action Plan, the Families Commission sought feedback from parents, carers, and children on before school, after school and holiday care services for children under the age of 14. Nineteen consultation meetings involving 350 adults and 190 children were held in 2007. An additional 600 people provided feedback through the Commission’s online panel – The Couch.
Structure:
Consultation meetings: An average of 23 adults attended each of the 19 meetings (held in 12 different locations throughout both the North and South
Families Commission, (n.d.), Families Commission: The couch case study, Accessed 4 February 2008 from http://wiki.participation.e.govt.nz/wiki/Families_Commission:_The_Couch_Case_Study 19 Families Commission, (n.d.), Out of School Services background, Accessed 26 February 2009 from http://www.familiescommission.govt.nz/research/our_projects/oss.php 20 Families Commission, (n.d.), Families Commission: The couch case study, Accessed 4 February 2008 from http://wiki.participation.e.govt.nz/wiki/Families_Commission:_The_Couch_Case_Study 21 Families Commission (n.d.) When School’s Out: Conversations with Parents, Careers and Children about Out of School Services. Available from: http://www.familiescommission.govt.nz/publications/research.php
18
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Islands of New Zealand). Held in the evenings, these meetings often started with a light meal. Sessions were run by an independent facilitator with participants working through three sessions in either groups or in pairs. Responses were recorded by participants using flipcharts. Detailed notes also taken by Families Commission staff. Online panel: There are currently 3,801 registered members22 on ‘The Couch’ panel of which 603 responded to the questionnaire on out of school services. The Families Commission uses The Couch, an online panel, to gather information from New Zealand families through regular online surveys and polls. The Couch’s marketing positioning is very much in line with that of the Families Commission a comforting, loving personality – making it easy to provide your point of view. Membership to The Couch is open to the pubic by signing up on The Couch website. Basic demographic details are collected at the registration stage, and are used for statistical analysis and to make sure that a representative sample of New Zealanders is reached23. Members of the online panel are kept engaged through regular email correspondence including results from recent polls they have conducted online and how the information gathered is being used by the Commission. Results and reports of surveys are also published on the Families Commission website: www.thecouch.org.nz. The Couch team also actively seeks to build awareness of the website/panel to increase membership numbers. Novel ways which this has been done have included setting up a red couch (the website logo) at local community events and ‘Fun Family Photo’ stands where families can get their picture taken which they can download from The Couch website.
Content:
Consultation meetings: During the face-to-face component of the project, participants spoke about OSS in general, their current OSS situations, and what their ideal OSS would be like. Participants were asked to report their ideas back to the group prompting further discussion. At the end of the day, participants identified the top three priorities raised from their discussions. Children who attended the meetings were asked simple questions such as what they would most like to do before/after school and in the holidays when mum/dad/nanny/koro were unable to look after them and where they would like to go for this. Responses from the children were in the form of drawings, verbal or written answers. Online panel: Topics put to the online panel included: Satisfaction with current OSS; Factors affecting use of OSS; Demand for OSS; and Preferences for after school/before school and holiday OSS.
22
23
Ibid http://www.thecouch.org.nz/member/faq#9
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Responses to the online survey, especially the open ended questions, were used to support the findings of the face-to-face consultations. Objectives To provide information to the New Zealand Ministry of Social Development from which to develop an OSS Five Year Plan To complement the Ministry’s consultation with other key stakeholders (operators of OSS) To explore the issues surrounding out of school care To explore childcare barriers and potential solutions to out of school care Information sought The key questions asked in the consultation meetings were: Are you happy with your children’s care arrangements out of school hours? What is not so good about your current out of school care arrangements? If you were able to design services or care to fully meet your needs, what would they look like? Selection of participants
Consultation meetings: Most of the consultation meetings were open to the general public; however, the Families Commission was cognisant that attracting people to such meetings would be difficult, and as such, they decided to work with local hosts utilising the knowledge they had of their communities.
Meetings were publicised in a number of ways including: Advertisements and articles in local papers; Advertisements on community radio stations; and Posters in schools and on community noticeboards (e.g. in supermarkets, churches, GP waiting rooms). Local hosts also used direct methods to personally invite families in their network to attend. Some of the local hosts included: charitable trusts, schools, parent networks, community housing organisations, and a refugee forum. It is likely those who attended had a personal interest in the development of OSS.
Online panel: Membership to the Families Commission Online Panel is open to all New Zealanders. All members were invited to take part in the OSS survey.
Involvement of different audiences
A concentrated effort was made to include a wide section of the community including: rural families; families with children with special needs; shift and seasonal worker families; and Māori, Pacific Islander and ethnic communities. In addition, six of the 19 meetings were targeted the following specific groups of the community: Grandparent carers; Refugee families; Children (two groups); Māori; and Second chance learners (those attending adult education).
Resources required
Face-to-face consultation meetings:
Facilitators
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Venue Promotional material (posters, advertisements) Refreshments Koha (gift) to hosts for their assistance Roughly NZ $10,000 per consultation meeting
Online panel:
Initial set-up can be capital intensive (design of online portal etc) however once set up, cost per new poll or survey is low IT capabilities (can be outsourced) Panel managers – ‘ministers’ Promotion of panel to increase registrations Requires regular polls/surveys as well as regular communication regarding results of recent surveys/polls to keep audience engaged. Also gives members an indication that their feedback is being used in some way. In the order of $1000’s to set up online panel including portal Strengths and weaknesses
Face-to-face consultation meetings:
Wide range of families involved in consultation process Not only engaging with families directly but also with the wider community through various community groups
Online panel:
Access to a ‘captured’ audience – by signing up, panel members have already indicated they are willing to provide feedback through completing surveys/polls Once panel is set up, there are opportunities to conduct surveys at a relatively low cost Quick turnaround as results can be accessed in real time The potential for specific groups to be targeted based on demographic details provided at registration.
Online panel:
Low response rates if members not interested in topic or not kept engaged therefore requires regular communication with panel members to be successful Not all have access to high speed internet usually required to conduct surveys, although penetration for the internet is increasing, An online panel is not just about sending regular surveys to a mailing list, it requires ongoing management in generating members and generating goodwill among existing members in order for it to be effective. Outcomes The report of the findings was submitted to the Ministry of Social Development to support the development of the Out of School Services Five-Year Action Plan. Many of the recommendations of the report were incorporated into the Plan with funding for Year 1 approved in 2007. The plan included steps to improving the quality, affordability, availability and accessibility of out of school services to children up to the age of 14 years. Along with establishing the Out of School Services Advisory Group, the Government indicated it would fund 12 Extended Services (school based out of school services) programs in urban schools by 2010. The four of these Extended Services programs began operating in
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February 2008, with a further four due to start in 2009. Relevance to PHARMAC The Families Commission’s consultation with parents, caregivers and children is an example where a wide consultation with the community has contributed to the planning of services delivered by the government. Not only did the consultation involve a wide geographic spread of New Zealanders, but a conscious effort was made to include families that may have particular needs in terms of out-of-school care beyond the Māori and Pacific Islander communities such as rural families, parents undertaking adult education or seasonal workers. The use of local community groups and networks helped the Families Commission to achieve this. It also demonstrates how an online panel may be a way in which PHARMAC can keep regular contact with people who have shown an interest in what they do instead of interacting through one-off consultations or surveys.
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Case study 3:
Project title Ceredigion NHS Trust - Patient Stories (Wales)24
Overview of approach
Who? How? Inform
Citizens Consult Involve
Service Users/Consumers Collaborate
X
Empower
X
Why? Democracy Better services Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
X
When? Scoping ------------------
X -------------------
Decision made Ongoing
One- off
Fixed length
X
Description of the process/tool for engagement
Summary:
The Royal College of Nursing Clinical Leadership Program was ‘designed specifically to create patient-centred clinical leaders, capable of developing effective team relationships that enable the delivery of client-focused care’.
25
As part of the program, nurses of the Ceredigion NHS Trust spoke to patients, carers and relatives to collect patient stories about their experiences while in hospital.
Structure and Content:
By 2006, nurses had collected 150 patient stories from 24 projects. Each project concentrated on one particular service or aspect of a service offered by the NHS. To encourage participation, interviewers were subject to guidelines on confidentiality. In addition, the nurses who conducted the interviews were unrelated to the project being explored to ensure impartiality. Objectives The objectives of collecting patient stories were to:
OPM/Wales Assembly Government, (2006), Making Consultation real, Accessed 17 February 2009 from http://www.wales.nhs.uk/sites3/docmetadata.cfm?orgid=420&id=62562&pid=15467 25 RCN Institute, (2005), RCN Clinical Leadership Program - Transforming Clinical Leaders to become Agents of Positive Change: Executive Summary, Accessed 2 March 2009 from http://www.rcn.org.uk/__data/assets/pdf_file/0009/78651/002524.pdf
24
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Gain constructive feedback on the entire patient experience; Develop suggestions for improvement to services; Provide patients with the opportunity to express their views about he service they received; and Develop the listening skills and understanding of the nurses who were collecting the stories. Information sought The patient stories collected for a project were grouped together and recurring themes drawn out from the stories. The themes were then used to develop action plans for improvements to the services. Patients were randomly selected to take part in an interview. For example, every fifth person on the service user list would be approached. The study involved collecting stories from patients, carers and relatives of patients.
Selection of participants Involvement of different audiences Resources required
This is a low-cost way of engaging with stakeholders Training of interviewers Creation of interview guide Reporting and analysis Dissemination of information gathered Low NZ $1000’s per interview
Strengths and weaknesses
Gave nursing practitioners an opportunity to listen to patients and develop an understanding for the areas patients valued most Allows nurses to improve their listening skills Offering patients another outlet to provide feedback in a way that makes them feel like they are being heard, especially if their stories help lead to improvements in the services provided A more personal approach to getting feedback from patients Building rapport between NHS and their ‘customers’ Opportunity to celebrate and learn from the positive stories as well as improve from the less positive patient experiences Relatively low costs and doubles up as training for staff Not a representative measure of the patient population
Outcomes
The patient stories were used to identify where there key themes where improvements could be made to the services provided in the Ceredigion NHS Trust. Some of these included a low awareness of the services available to patients, and confusion around the different roles of the staff patients came in contact with. As a result, changes were made to the admission process and care pathways to minimise the need for patients to seek out information themselves. Another area for improvement identified required little investment and could be implemented immediately. Patient stories revealed that patients often entered the hospital by a back door as opposed to the main entrance. This would often result in patient losing their way or ending up waiting in incorrect areas. The
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solution was a simple but important one with new signage put up in these areas.26 Feedback was delivered to various NHS services through both formal and informal means. Action plans were developed in team meetings and feedback on other areas within the NHS such as catering and estates was also conveyed to the relevant parties. In the long term, patients were appreciative of the opportunity to be involved in improving patient care and the nurses were able to develop their listening and empathising skills. Relevance to PHARMAC Collecting stories from people who are positively and negatively impacted by the decisions made by PHARMAC could highlight areas for improving communication, decision-making or the approval process that may not be apparent to the organisation. Publishing the positive stories could also be a way of promoting the good that PHARMAC does in a ‘personalised’ way.
26
Royal College of Nursing (2006) Clinical Leadership News. Spring Issue pp 80-81 Accessed 2 March 2009 from http://www.rcn.org.uk/__data/assets/pdf_file/0009/64953/clinical_leadership_spring_2006.pdf
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Case study 4:
Project title Swansea NHS Trust – Editorial Board (Wales)27
Overview of approach
Who? How? Inform
Citizens Consult Involve
Service Users/Consumers Collaborate
X
Empower
X
Why? Democracy Better services Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
X
When? Scoping ------------------------------------
X --
Decision made
One- off
Fixed length
Ongoing
X
Description of the process/tool for engagement
Summary: In 2004, the Swansea NHS Trust established a patient/public editorial board to review patient information documents. In the past, patient information publications were approved by an editorial board made up of medical professionals. Structure and content: The editorial board comprises six members from the Patient and Public Involvement (PPI) Network and is organised by the Trust’s Patient Experience Manager.
The board meets every six weeks or more if required to review all information leaflets produced by the Trust. Up to 15 leaflets are covered each meeting. There are set minimum requirements for leaflets such as the inclusion of contact details, times of availability etc. Where the topic of the leaflet is technical, specialists are asked to attend meetings to answer any questions. Feedback is provided to the producer(s) of the leaflets. Producers of the leaflets are often present and both the board and producers work collaboratively to make amendments. Any amendments must be resubmitted to the board for final approval. Once approved, the leaflet is translated into Welsh and all leaflets are made publicly available. A review date is also scheduled with all documents reviewed every 1-2 years.
27
OPM/Wales Assembly Government, (2006), Making Consultation real , pp 78-79, Accessed 17 February 2009 from http://www.wales.nhs.uk/sites3/docmetadata.cfm?orgid=420&id=62562&pid=15467
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Objectives
To involve end-users in assessing the suitability of draft leaflets for public consumption To make recommendations for improvements To meet with people responsible for producing leaflets and provide feedback Provide ongoing reviews of leaflets in the Trust To improve communications about NHS services
Information sought Selection of participants
The process ensures that all patient information has been assessed for its usability, layout and content by a group representing the ‘end-user’. Board members were people who had been invited to join the panel and had been recruited from various groups within the PPI Network. Board members do not require any specific qualifications or experience. There is little turnover among board members however, open evenings have been used to invite people to join the board.
Involvement of different audiences
Producers of the leaflets (e.g. NHS Service departments) Specialists (e.g. doctors, nurses) End-users (e.g. board members) NHS representative (e.g. Patient Experience Manager)
Resources required
Low resources required – board members already have an interest in participating in health issues by being a part of the PPI Network. Consideration could be given to reimbursing board members for their time. All publications are assessed by the end-user It is a means of quality assurance Publications are worked on collaboratively as specialists, producers, end-users and NHS administration all involved in the process It provides the opportunity for people of different Patient and Public Involvement groups to work together Low cost If members are on the editorial board for extended periods of time, they may become accustomed to the patient leaflets. They may become less like an enduser and more like an ‘expert’ on patient information.
Strengths and weaknesses
Outcomes
In the first 18 months since the establishment of the board, over 100 leaflets had been through the approval process. The board understands they do not the technical expertise to comment on the clinical content but in the past have made suggestions regarding the use of jargon and the flow of the information presented. Other organisations such as the Child and Adolescent Mental Health Services (CAMHS) have also sought out the services of the Swansea NHS Trust editorial board to assess the information provided to their stakeholders.
Relevance to PHARMAC
This case study highlights a different approach to the use of consumer representatives than that currently employed by PHARMAC. Like PHARMAC’s Consumer Advisory Committee (CAC), the editorial board at Swansea’s NHS Trust represents the interests of the general public. The
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difference lies in the fact that members of PHARMAC’s CAC are appointed to ‘represent the interests broader than those of a specific group and can demonstrate a connection to a particular community of consumers’28. Members of editorial board are essentially end-users although it is noted that these ‘end-users’ are more likely to be interested members of the community having been recruited from the Patient and Public Involvement Network.
28
PHARMAC Consumer Advisory Committee - Terms of reference for the Consumer Advisory Committee (CAC), http://www.pharmac.co.nz/2002/04/18/CAC_TOR.pdf
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Case study 5:
Project title CaliforniaSpeaks – The Public Weighs on Current Health Care Reform Proposals29 (United States)
Overview of approach
Who? How? Inform
Citizens
X
Involve
Service Users/Consumers Collaborate
X
Consult
Empower
X
Why? Democracy Better services
X
Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning
2
3
Design
Delivery
Evaluation
X
When? Scoping One- off -------------------------------
X -------
Decision made
X
Fixed length
Ongoing
Description of the process/tool for engagement
Summary: On 11 August 2007, 3,500 Californians took part in a day long deliberation on health care reform across eight different cities. This event was lead by the non-partisan organisation, AmericaSpeaks, a not-for-profit whose mission is to “reinvigorate our nation’s democracy by engaging citizens in the public decision-making that most impacts their lives” 30 Structure: The deliberative events were held in eight locations across the state. In total, there were 400 trained facilitators with participants divided into smaller groups (average of 9 people per table).
To measure participant attitudes throughout the day, electronic voting keypads were used. Notes on group discussions were also taken via networked laptops. Satellite technology linked together the eight meeting locations and large screen and projectors were also used. The CaliforniaSpeaks event was also webcast live
29 CaliforniaSpeaks, (2007), CaliforniaSpeaks The Public Weighs in on Current Health Care Reform Proposals highlights of August 11, 2007 Statewide Conversation, Accessed 4 February 2009 from http://americaspeaks.org/document/docWindow.cfm?fuseaction=document.viewDocument&documentid=61&document FormatId=128 30 AmericaSpeaks, (n.d.), AmericaSpeaks 2007 Program Report, Accessed 4 February 2009 from http://www.americaspeaks.org/_data/n_0001/resources/live/2007_ProgramReport_AmericaSpeaks.pdf
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online.
Content: The topics discussed on day were based on decisions that were being made in the August-September 2007 legislative session. The purpose of the deliberative events was to get the citizen’s perspective on six of these proposed changes.
Participants were greeted by the Governor of California and then presented video and PowerPoint presentation about the major health care reform proposals including issues related to employer, government, insurer and individual responsibilities in health care. Discussion guides were developed with information for facilitators on the background to the reforms. Some of the groups were also facilitated in Spanish and Chinese. Participants were asked to discuss what they liked about each proposal, any concerns about the proposals and what they thought was missing. Participants were then asked to vote on each proposal. Objectives Information sought To insert the public’s voice into the policy process. Throughout the day, participants discussed their willingness to support the changes and if not, under which conditions they would. The CaliforniaSpeaks events also underwent independent evaluations to assess the impact on the public, participants and policy-making. Selection of participants 120,000 residents of California were randomly sampled to be invited by phone and mail to attend the event by an independent research company. Some ethnic minority groups were over-sampled to ensure these groups were represented among participants. Letters from the Governor, State President and the Speaker of Assembly were also sent to 300,000 Californians to encourage participants to attend. Of the 3,500 participants, 71% of were those who had been among those who had been randomly selected; the remainder were guests of these participants. Participants did not receive a monetary incentive for attending but they were offered a $25USD gift card, food, childcare and help with transportation if required. Participants were generally representative of the state’s population in terms of income and health insurance status although there was a slight overrepresentation of females and participants aged 25-44. It was also commented that participants were more diverse that the voting population. Involvement of different audiences One of the goals of the discussions was to make sure the outcomes were representative of the state and therefore deemed fair and credible. Discussions involved people who did not have health cover (13% of participants, 12% of the actual population) as well as people of ethnic minority backgrounds such as African Americans (8% of participants and 6% of actual population), Asian/Pacific Islanders (9% of participants, 11% of actual population) and Native Americans (2% of participants, 1% of actual population). State Government representatives also attended the events including the Governor of California, State President Pro Tem, Assembly Speaker and Assembly Republican Leader. Resources required Such a large scale event is as expected very resource intensive. An exercise like CaliforniaSpeaks also requires substantial time dedicated to event management. Other resources:
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- Recruitment of participants (letters, follow-up calls etc) - Large venue(s) – large enough to accommodate hundreds of participants - Voting technology - Projector and screens - Facilitators (400 used in this example) - Master of Ceremonies (to introduce, summarise, keep time) - Catering - Satellite technology Cost per deliberative event would be in the order of $60,000-80,000 per event. Strengths and weaknesses Large scale consultation Participants were diverse and generally representative of the population. They were everyday people, not just people in the industry who had a stake in healthcare talks (i.e. doctors, nurses, insurers) Day long event allows participants to comprehend and explore the issues in detail and hear the viewpoints of others Attendance by senior government representatives demonstration of the commitment to health care reforms Widely publicised event - media attention Use of technology to streamline the running of the event (voting instead of paper ballots; networked computers for real-time access to notes on the discussion) Use webcast technology to involve the wider population Due the short time frame between the events and the legislative session, the value of undertaking such a wide community engagement exercise was diminished. The feedback from the evaluation of the events included the need for community consultation much earlier in the decision-making process. Large scale therefore very resource intensive Outcomes An analysis of the proposals submitted to the Senate committee in September, October and November 2007 found the final plan moved was much closer to the priorities of the Californian public as a result of the discussions held at CaliforniaSpeaks. However, due to a $USD14 billion budget deficit in 2007, the Senate committee did not pass the $USD14.4 billion health care proposal. There were a number of other positive outcomes from conducting the engagement events including the opportunity for policy makers to hear what the average Californian feels about health care and creating a sense of urgency among lawmakers for a healthcare reform that was non-partisan. Recommendations for future community engagement events such as CaliforniaSpeaks included a more transparent agenda, to conduct the
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consultations earlier in the decision-making process and to provide a mechanism for dialogue after the events.31 Relevance to PHARMAC Healthcare is a topic that is relevant to everyone and level of interest in participating in CaliforniaSpeaks has clearly demonstrated this. Although the policies were not passed in government, the proposals largely reflected the values discussed by the participants, which is an important outcome of citizen participation. This example does show that dialogue with citizens could be better utilised if it is conducted earlier in the planning process. Later in the decision-making process, and the engagement exercise, even one on this scale, runs the risk of appearing tokenistic.
31 Harder + Company Community Research, (2008), An assessment of the impact of CaliforniaSpeaks on health care reform in California, Accessed 4 February 2009, from http://www.californiaspeaks.org/document/docWindow.cfm?fuseaction=document.viewDocument&documentid=144&d ocumentFormatId=217
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Case study 6:
Project title National Road Safety Committee - Road safety to 2010 Workshops and Online community forums (New Zealand)32 33
Overview of approach
Who?
Citizens Inform
X
Service Users/Consumers Involve Collaborate Empower
How?
Consult
X
Why? Democracy Better services Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning
2
Design
Delivery
Evaluation
When?
Scoping One- off
-
X ------------------------------------Fixed length
Decision made
X
Ongoing
Description of the process/tool for engagement
Summary: The National Road Safety Committee is an interagency committee where the purpose is to “collectively work to reduce road trauma, and achieve the Government’s road safety outcomes.”34
A series of workshops and an online community forum conducted to allow for stakeholder input into the development of the Road Safety to 2010 Strategy.
Structure and content:
Workshops: Fifteen workshops held throughout New Zealand, supported by the Ministry of Transport, were delivered by regional Road Safety Coordinators where people at the local community level had the opportunity to take part in pre-policy discussions. The workshops were run in partnership with the Ministry, district councils, NZ Police, Land Transport NZ, Transit NZ and the Accident Compensation Corporation (ACC). Workshops started with an introductory plenary presentation. Participants also watched a road safety DVD and were provided with some background
32
SafeAs! Roadsafety Stakeholder Engagement Case Study, Accessed 3 February 2008 from http://wiki.participation.e.govt.nz/wiki/SafeAs%21_Roadsafety_Stakeholder_Engagement_Case_Study 33 About Safe As! (n.d), http://www.safeas.govt.nz/safeas-about.html 34 Safe As Presentation (n.d) Accessed 5 March 2008 from http://www.safeas.govt.nz/safe-as-presentation.ppt
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information on road safety in New Zealand and overseas. The workshops concentrated on two key questions: 1. What are the specific problems related to speed, alcohol and young drivers that you believe are negatively affecting road safety? If you believe other issues are equally or more important, what are they and what are the specific problems associated with these issues? 2. What ideas do you have to resolve the problems identified in question 1 and how could these be implemented in ways that would achieve broach community support? Participants were divided into small groups to discuss the questions and ideas generated from the questions above with each group reporting to the whole group. In two of the workshops, participants could vote on ideas using stickers indicating if they would fully support it, tolerate the idea or not support it at all. Summaries of each workshop were posted online for comment by participants after the event The workshops ran for 3-4 hours and included light refreshments and more than 1000 people took part. Online community forum: The consultation also included The Road Safety Forum www.safeas.govt.nz/smf. Notes from each of the 15 workshops were posted online providing participants the opportunity to discuss the topics in further. The community forum also allowed for online discussion on topics such as: speed management, alcohol and drugs and penalties. Participants were informed that the Ministry of Transport would be monitoring conversations and engaging in a dialogue with participants. While the forum is now closed, the site is still kept online as a resource for road safety policy makers as well as interested members of the public. There were 270 registered users on the community forum with over 3000 posts submitted. The intention will be to also use the forum for engagement activities for developing the road safety strategy beyond 2010. Objectives To involve stakeholders and interested members of the community in identifying current road safety issues and development of solutions to address the issues; To achieve an effective well planned and well informed process of stakeholder engagement which has the confidence of Ministers and the community; The development of firm, implementable road safety policy and program proposals which meet the Government’s requirements and can deliver the Road Safety to 2010 strategy goals. Information sought Selection of participants To gather and discuss ideas that may influence further government policy on resources, law or programs to do with road safety Road safety coordinators provided the Ministry with the contact details of local stakeholders and other community groups so these groups could formally invited to attend the sessions. Approximately 1000 people took part in workshops with over 300 different organisations represented. Involvement It should be noted that the ‘sampling’ and therefore the results were not
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of different audiences
intended to be extrapolated to the views of the community at large. There were relatively few people who attended the workshops on their own behalf however, stakeholders who attended the workshops did include a broad range of organisations from the community including district councils, automotive industry representatives, schools and universities, Māori and Pacific Islander groups, automobile clubs, youth trusts, driving schools, cyclist associations, various government departments, women’s groups, district health boards etc. It was estimated that around 20% of participants attended on their own behalf. One of the recommendations for future engagement activities was to increase the level of feedback from members of the public in general.
Resources required
As these workshops were conducted by local representatives, it is important to ensure that the workshops are as consistent as possible. Measures to ensure this include: Guidelines on how to conduct workshops Training and detailed briefing of road safety coordinators Consistent stimulus material $60,000-80,000 per workshop
Strengths and weaknesses
Allowing the local road safety coordinators to organise and run the workshops creates a sense of ownership among coordinators Sufficient support from the Ministry to allowing local road safety coordinators to run the sessions effectively High level of interest from the community groups invited to attend the workshops Stimulus materials were consistent Allowed for participants to carry on the discussion after the workshop through online forum Need for greater input from the general public Dependent on the skills of coordinators but can be resolved through set-up phase and training
Outcomes
In December 2006, the Minister of Transport and the Transport Safety Minister released the Road Safety Policy Statement which was based on the feedback from the community as well as stakeholders in road safety. One of the standout themes from the consultation process was education and information. As a result, the Road Safety Education Strategic Framework was also developed.
Relevance to PHARMAC
The Road Safety community consultation demonstrates where stakeholder and citizen/consumer engagement can be used as a basis for policy development. Of relevance to PHARMAC is the use of local networks to engage community groups who would not ordinarily volunteer to take part in such activities. The use of local coordinators can also create a sense of ownership that this is a chance to provide their say. As this case demonstrated, the face-to-face discussions can often give participants more ‘food for thought’. Offering the option of continuing the discussion using the online forum demonstrates how engagement can be an ongoing process after the main event and not just a mechanism for gathering feedback in itself.
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Case study 7:
Project title Participatory Budgeting (Brazil)35
36
Overview of approach
Who? Citizens How? Inform
×
Service Users/Consumers Involve Collaborate Empower
Consult
×
Why? Democracy Better services Social capital Economic development
1
2
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping made --------------------------------
X -------
Decision
One- off
×
Fixed length
Ongoing
×
Description of the process/tool for engagement
Summary: Participatory budgeting is ‘a process through which citizens present their demands and priorities for civic improvement, and influence through discussions and negotiations, the budget allocations made by their municipalities’. This technique has been highly popular in Brazil, where the first participatory budgeting process was undertaken in 1989 in the city of Porto Alegre (population of approximately 1.3 million). Structure & content: (Example: city of Belo Horizonte) Every two years, city administration and community leaders invite citizens to the ‘opening’ of the participatory budgeting process. Citizens are also invited to ‘district rounds’ taking place in each of nine districts of the city. At the district rounds/forums, the methodology of the participatory budgeting process is described. Facilitators
35 Peixoto, T. (2008). e-Participatory budgeting: e-Democracy from theory to success? Switzerland: E-Democracy Centure, Universitat Zurich. Downloaded from: edc.unige.ch/edcadmin/images/Tiago.pdf on 3 February 2009. 36 Serageldin, M, et al. (n.d). Assessment of Participatory Budgeting in Brazil. Harvard University: Center for Urban Development Studies. Downloaded from: http://www.iadb.org/sds/doc/ParticipatoryBudget.pdf on 3 March 2009.
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invite citizens to fill in a form setting out their ‘demands’ for public works. Representatives of each neighbourhood gather the broader neighbourhood community to explore what the priorities for public works are in their neighbourhoods. A second round of forums takes place at a subdistrict level. The administration present each sub-district a budget (proportional to the subdistrict’s population and quality of life index). As part of these forums, citizens select no more than 25 public works for each district. Delegates from each subdistrict are also elected. Elected ‘delegates’ then undertake a tour of each of the 25 selected public works, to gain a better understanding of each program. The administration estimates the cost of conducting each of the 25 selected works. These are presented at a ‘districtal forum’. Attendees choose a maximum of 14 of the 25 works. District delegates are then elected (as opposed to subdistrict delegates). District delegates present to the mayor at the ‘Municipal Meeting of Budgetary Priorities’ the selected 14 public works to be executed by the administration. The above process typically takes place over a 9-month period. Objectives To involve citizens in public financing decisions. The concept was derived from the requirements for popular participation in decision-making, as set out in the ‘Lei Organica’ charter of local governments in Brazil. Citizens’ perceptions of what they see as priority areas for municipal governments to fund as part of the regular budget cycle. Invitation of all citizens to attend the official opening and district rounds.
Information sought Selection of participants Involvement of different audiences
Lower-income communities, for example, are able to include requests for funding for consideration by forum attendees. Largely attended by middle income groups. Higher income groups typically do not attend meetings. The costs to replicate this project would be large – we would envisage an exact replica would cost in the order of hundreds of thousands of dollars. A simpler, more cost-effective methodology could be developed. Time is a large resource (the complete process in this example can last for up to 9 months) – although not all budgeting workshop processes would take this length of time to complete
Resources required
Strengths and weaknesses
Created a local political culture of ‘constructive debate and civic engagement in governance’ Relationships between lower income members of the community and government have improved due to better understanding of each others’ needs Has resulted in an increased proportion of capital investments in lower income areas Citizens have many opportunities to share their views The Brazilian processes cover capital investments only (although budgeting workshops could be tailored to particular areas of interest) – issues tend to favour short-term gains rather than long-term infrastructure.
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Resource and time intensive Feedback suggests that some citizens find budgetary concepts hard to grasp (particularly the revenue side of the budget equation) Outcomes A set of budget priorities, developed by citizens, in a transparent and accountable manner Described as an instrument of ‘empowerment and social inclusion’ – enhances citizen understanding of the budget process and sensitises their attitudes towards the needs of others Relevance to PHARMAC Given the lengthy process and high costs involved in replicating this tool, we do not consider this exact approach to be highly relevant for PHARMAC. Participatory budgeting workshops have been conducted on a smaller scale and more cost-effectively elsewhere (for instance, Local Council Budget Workshops, UK). Budgeting workshops would be applicable should PHARMAC wish to explore with consumers/citizens its budgeting decisions in a broad sense, rather than for individual pharmaceutical funding decisions (or it could be useful in exploring trade-offs between different pharmaceuticals). As the case study in Brazil demonstrated, a budget workshop could provide a way for lower income citizens to ‘have their say’ with respect to funding decisions, when traditionally this has been challenging (trying to compete with the voice of business or particularly vocal consumer groups). We would recommend budget workshops to PHARMAC on a smaller scale than what is being adopted in Brazil, but with a similar philosophy of engagement.
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Case study 8:
Project title Consumer-Designed Service Information Hubs (Australia)37
Overview of approach
Who?
Citizens Inform Consult
Service Users/Consumers Involve Collaborate
×
How?
Empower
×
Why? Democracy Better services Social capital Economic development
2
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping
×
----------------------------------------Decision made
At all stages of policy development and implementation
One- off
X
Fixed length
Ongoing
Description of the process/tool for engagement
Summary: The South West Area Health Service, located in Victoria, Australia, established a Consumer Reference Group (the CRG) (date of establishment unavailable). The CRG comprises 15 members representing users of the 23 member agencies of the South West Primary Care Partnership (SWPCP). The CRG felt that there was a lack of information available to consumers about the services provided by the SWPCP. In response, the SWPCP funded the CRG to conduct a consultation with the community to validate this hypothesis. This process was completed in 2003 and was referred to as the ‘Consumer Access to Service Information Project’. Structure & content: Members of the CRG volunteered to conduct an ‘outreach strategy’ to their own communities to seek preferred methods to access information about health services.
Consumers, other than members of the CRG, were involved in the project through providing their views to members of the CRG (although it is not
37
Emacora, J. (n.d.) Primary Care Reform: Consumers Getting the Job Done. Downloaded from: http://www.participateinhealth.org.au/clearinghouse/Docs/jaermacora81.pdf on 16 February 2009.
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specified how they actually did this). ‘Consumers’ in the form of members of the CRG, were involved in the project at various stages: Development of the project proposal; Volunteered to conduct research with the broader community to seek their views; The CRG hosted a stakeholder workshop with SWPCP member agencies to discuss policy options; Developed the policy document; Attended SWPCP management meeting to witness endorsement of agreed policy; Formed part of a collaborative working party to oversee service development and implementation (including designing the Service Hubs’ logo); Involved in practical support (e.g. distribute promotional flyers for the new service hubs). Objectives To test the hypothesis that consumers felt there was a lack of information provided about health services, and once that hypothesis was confirmed, to develop an appropriate solution to that problem. Consumer experiences in accessing health service information.
Information sought Selection of participants Involvement of different audiences
Either by being a member of the CRG, or via invitation from members of the CRG. It is not known to what extent disadvantaged groups were involved in the project. It is known that the consultation with the broader community involved both services users and other citizens who are not necessarily users of the current service. This approach would likely require limited financial resources, although this would depend on the type of consumer research undertaken (e.g. survey, focus groups, interviews, workshops), time required of PHARMAC staff or CAC members, and whether external expertise was engaged to assist. Involvement of consumers (as members of the CRG) throughout all stages of the project, from problem identification to development of policy options and implementation of the new service model CRG sought views of the broader community in making its representations to the SWPCP Adopted a consumer-driven governance process Limited to largely Reference Group involvement (although the nature of how citizens were engaged was not explored in detail – although the discussion implied that this was unlikely to be a broad cross-section of service users or the community)
Resources required
Strengths and weaknesses
Outcomes
The final output of the project was the development of Service Information Hubs, centralised places within health services citizens and service users could go to locate health system information. The exact nature of the hubs was not explored in detail within the sourced article.
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Relevance to PHARMAC
We see the approach outlined above as a highly relevant model for adoption by the PHARMAC Consumer Advisory Committee. The CAC has the ability to engage and consult with the community included in its Terms of Reference; this could be one way the CAC may wish to explore engaging the broader community in its work. What is missing in the case study is information regarding how service users were engaged in this particular instance (for instance, did members of the CRG simply chat with people in the community they know, distribute a survey, run discussion groups, conduct interviews?). Any number of tools could be adopted here. The key point of difference with this case study to other similar case studies we have come across is that consumers (in the form of the CRG) were involved in the project from beginning to end (including being present when contracts for establishment of the hubs were signed by health service leaders).
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Case study 9:
Project title Public Dialogue Sessions (Canada)38
Overview of approach
Who? Citizens How? Inform
× ×
Service Users/Consumers Involve Collaborate Empower
Consult
Why?
Democracy
Better services
Social capital
Economic development
2
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping -------------------
×-------------------
Decision made
One- off
×
Fixed length
Ongoing
Description of the process/tool for engagement
Summary: Ipsos Reid, on behalf of the Canadian Medical Association, ran a series of 5 ‘public dialogue sessions’ in 2001 addressing Canadians’ views of the health care system. Sessions were run in Toronto, Quebec City, Vancouver, Bridgewater and Saskatoon. Structure: Public dialogue sessions comprise a unique blend of quantitative and qualitative research. The sessions, which lasted for 3 hours, consisted of:
a quantitative pre-test questionnaire; group discussion sessions (1 hr 45 mins); quantitative post-test questionnaire; opportunity for participants to share impressions of the session and to voluntarily participate in a videotaped ”speaker’s corner” in which participants were asked to give one piece of advice to the Canadian Minister
38
Ipsos Reid (2001). Public Dialogue Sessions 2001: National Report. Author: kindly provided by our colleague Mike Colledge at Ipsos Reid, Ottawa.
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for Health about the future of the health care system. In each location, four of the five discussions were moderated by physicians chosen by the Canadian Medical Association (prior to facilitation, physicians were carefully trained by Ipsos Reid facilitators). The fifth table was moderated by an Ipsos Reid facilitator.
Content: Issues explored included:
priority issues for health care reform; quality of health service delivery; emergency room waiting times; health workforce issues (e.g. should nurse practitioners have the authority to prescribe drugs?); health and the internet; acute versus preventive health; the ageing population; health system funding and expenditure. Objectives The main objectives of the dialogue sessions were to: allow for meaningful dialogue between the health care profession and a representative sample of Canadians on health care issues; measure the impact of physician communication and public dialogue on key health care issues; conduct statistically meaningful research with a representative sample of Canadians in a dynamic environment; map the public opinion process relative to key health care issues. Information sought Pre-test questionnaire: gathered information addressing participants’ opinions on key health care issues and to provide a baseline against which to assess the impact of the group discussions. Group discussions: discussed in depth participants responses to the questionnaire. Physician moderators were able to provide basic factual information about health care issues and evaluate the impact of this information on participants’ opinions. Participants were able to share information and hear each other’s views. Post-test questionnaire: Asked for opinions on the same health care issues as the pre-test questionnaire. Aim was to measure any change in opinion that resulted from the group discussions. Selection of participants In each location, approximately 50 participants were randomly recruited by telephone. All participants were over 18 years of age and were screened to ensure they did not work in market research, for the media or in the health care field (this is standard market and social research practice). Quotas were set to ensure equal requirement of males and females in each location, as well as a good mix of age, income and education to represent a broad range of demographics. Representative sample of the Canadian community. No specific groups targeted during recruitment.
Involvement of different audiences Resources
We would estimate that for one session, in running an equivalent type of
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required
workshop, it would cost approx NZ $65,000, which would cover: Venue and catering costs and event management; A team of expert facilitators (one facilitator per table) and their preparation time; Preparation of stimulus materials; Research expertise to design questionnaire and analyse quantitative data; Consultant time to prepare; and A sample size of approximately n = 50 (and participant incentives of approximately NZ $200 each).
Strengths and weaknesses
Engages citizens on key health issues Measures change in attitudes as a result of participating in the group discussions Large sample size adopted, sample said to be representative (often not the case with deliberative research) Resource and time intensive Requires researchers/facilitators across multiple sites
Outcomes
In-depth qualitative and quantitative data to inform health system review. Ipsos Reid is currently undertaking a similar project, following on from the 2001 work, which incorporates full day dialogue sessions (as opposed to 3 hours).
Relevance to PHARMAC
Dialogue sessions offer similar benefits (and are a similar set up) to deliberative events (including the ability to explore complex issues in detail with a broad range of participants). They would be particularly valuable for PHARMAC in exploring strategic decisions, strategy development or problem-solving, and trade-offs or preferences. PHARMAC’s stakeholder forums are similar in philosophy, in that they gather a broad range of stakeholders to debate issues and PHARMAC strategies in detail – where this approach is different is that it is citizen rather than stakeholder focussed. Our experience tells us participants enjoy and feel engaged in this form of participation and value that they have made a contribution to public sector decision-making.
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Case study 10:
Project title NICE Citizens’ Council (United Kingdom)39
Overview of approach
Who? Citizens How? Inform
×
Service Users/Consumers Involve Collaborate Empower
Consult
×
Why? Democracy Better services Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning
2
Design
Delivery
Evaluation
×
When? Scoping -----
×
Decision made
×-------------------------------Fixed length
(but depends on the specific questions put to the Council) One- off
Ongoing
×
Description of the process/tool for engagement
Summary: According to the NICE website (www.nice.org.uk), the Citizens Council brings the views of the public to NICE decision-making about guidance on the promotion of good health and the prevention and treatment of ill health. A group of 30 people drawn from all walks of life, the Citizens Council tackles challenging questions about values - such as fairness and need. Structure: The Council meets twice a year over a period of approximately 3 days, where a particular question is discussed (for example, in January 2007, the question was asked ‘In what circumstances is it justified for NICE to recommend that an intervention is used only in the context of research?’). The Council’s discussions are facilitated by expert facilitators.
Prior to the meeting, NICE provides the Council with a background paper relevant to the issue at hand. Meetings may include presentations by expert speakers to explain difficult concepts (e.g. a health economist to explain the concept of Quality of Life Year measures (QALYs)), presentations by NICE staff, break-out group discussions,
39
Information from the NICE website: www.nice.org.uk, accessed on 2 March 2009.
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case studies, ‘straw polls’, question time with an expert panel). At the conclusion of the Council meeting, the Council prepares and submits a report to NICE.
Content: Depends on the research question. The last research question considered by the Council was:
‘Should NICE and its advisory bodies take into account the severity of a disease when making decisions? If yes, should the advisory committees: take severity “into consideration” alongside the cost and clinical effectiveness of evidence; or should severity be included in the calculation of the QALY?’ Objectives ‘Although NICE decisions are based on evidence provided by clinicians, researchers and patient experts, they are set against a background of social values and judgements. NICE (and the independent committees that advise it) must take into account what the public thinks about these key issues. For this reason, NICE set up a Citizens Council to bring the views and opinions of the public to NICE’s decision-making.’ Council views on key research questions prepared by NICE.
Information sought Selection of participants
About 30 participants from all walks of life sit on the Citizens Council. Members of the Council reflect the demography of English and Welsh populations. Council members sit for three years; one-third retire annually. It is not clear how Council members become involved, although as noted above NICE have stated that council members reflect the demography of England and Wales. To run an equivalent event, costs would need to include: PHARMAC staff preparatory work (selection of topic, preparation of background paper) 30 members of the public to take part over 3 days, twice per year (and gratuities for their time – including an additional day for 3 Council members to work together and prepare a report) Experienced facilitators (for 3 facilitators, 3 days attendance and preparation time, including development of stimulus materials) Expert presenters (briefing, preparation and time to attend) External venue and catering costs Project management, including initially recruitment to the Citizens Council and maintenance of communication with Council members (Optional) Voting capabilities (e.g. handheld voting sets) We (roughly) estimate the cost of running one Citizens Council would cost in the order of NZ $70,000-80,000 (this covers external costs only, not internal staff costs, and does not include voting technology – allow around $5000). Costs could be reduced by holding the Council at the PHARMAC offices (and reduce venue costs) or by not using external facilitators (we would not recommend this, however if external facilitators are used initially, PHARMAC staff could be trained to facilitate future Councils).
Involvement of different audiences Resources required
Strengths and weaknesses
Involves real citizens (not experts in consumer representation, or members of consumer groups) Allows citizens to explore and debate complex issues in-depth
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Both qualitative and quantitative data available Positive public relations exercise Explores issues in detail Resource intensive, including preparatory work for PHARMAC staff Held infrequently (twice per year) Each Council event focuses on one issue only Outcomes Relevance to PHARMAC Council provides summary report to NICE We see the Citizens Council as being a highly relevant model for PHARMAC to adopt. As noted above, the techniques enables real citizens (not necessarily educated and including people from special needs or low socio-economic groups) to explore and debate the complex issues inherent in PHARMAC’s work. PHARMAC would be able to leverage off the NICE Citizens Council work achieved to date, which could offer ideas for questions to address at PHARMAC Citizens Council forums (e.g. a Council forum on use and development of QALY). Clearly, there is overlap in the purpose of a Citizens Council and PHARMAC’s Consumer Advisory Group; however participants in a Citizens Council are truly ‘lay’ representatives. There is also potential for a Citizens Council and the CAC to work alongside each other, as long as their respective roles were clearly defined and differentiated.
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Case study 11:
Project title Citizen Workshop adopting the CHAT (Choosing Healthplans All Together) tool Adapting and evaluating a simulation exercise for public participation in priority setting (New Zealand)40 41
Overview of approach
Who? Citizens How? Inform
× ×
Service Users/Consumers Involve Collaborate Empower
Consult
Why?
Democracy
1
Better services
2
Social capital
Economic development
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping -----
X --------------------------------
Decision made
One- off
×
Fixed length
Ongoing
Description of the process/tool for engagement
Summary: Staff at the Nelson-Marlborough District Health Board and the Victoria University of Wellington (with the University of Michigan) conducted workshops involving simulation exercises with members of the community exploring priorities for health spending using the CHAT tool (owned by the University of Michigan and National Institutes of Health, US).
In addition to New Zealand, CHAT exercises have taken place in various US states (including Hawaii, California, Oklahoma, Maine, Minnesota, North Carolina) and also in India.
40
PowerPoint presentation provided by PHARMAC: Adapting and Evaluating a Simulation Exercise for Public Participation Priority Setting in New Zealand-Aotearoa. 41 Website: http://www.changemakers.net/node/1459, accessed 6 March 2009.
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Structure: 1 workshop-style session with n=114 citizens in the NelsonMarlborough DHB area. Participants ‘broke out’ into 12 smaller groups to work through CHAT activities. Length of time not specified. Content: CHAT exercises are computer-based exercises which comprise ‘gamelike’ activities in which groups of participants can choose between different benefit types they would like to see included in a health insurance package, including willingness to pay for these benefits using an actuarial model reflecting local data. Example health conditions or illnesses are used in different scenarios throughout the session.
Objectives
To give the public a voice in priority setting and to engage the public in decision-making about affordable health care that meets their needs To determine predictors of health insurance preferences
Information sought
An understanding of consumer preferences for health care services/benefits for inclusion in health insurance packages (at individual, state/area and national levels) Not specified.
Selection of participants Involvement of different audiences Resources required
Involvement of special audiences was not specified.
Information not documented in detail, so it is hard to estimate. However, royalties must be paid to the University of Michigan for use of the CHAT tool and accompanying workbooks. We envisage that costs would be at a minimum in the order of NZ $50,000.
Strengths and weaknesses
Use of simulation activities was seen to overcome apathy, perceived irrelevance, complexity Use of structured tool reduces need for planning and stimulus tool design High participant ratings (over 80%) on their enjoyment in taking part, being easy to understand and ‘do’. Nearly three-quarters (72%) would recommend participation to others Payment of royalties to University of Michigan and National Institutes of Health for use of CHAT tool Nelson-Marlborough session did not have a good mix of participants (for instance, strongly biased towards women and high income-earners) Participants felt that activity was only useful if findings were used or acted upon by decision-makers
Outcomes
Greater understanding of citizens’ views on health priorities. High participant enjoyment and advocacy.
Relevance to PHARMAC
Running a workshop with citizens or service-users adopting the CHAT tool could be useful in understanding consumer preferences (a similar model could be applied to PHARMAC funding decisions, exploring consumers’ preferences or willingness to pay for pharmaceuticals). However, it is difficult to determine how useful the CHAT tool could be to PHARMAC without reviewing the CHAT tool itself in detail – it may focus too specifically on health care insurance models to be useful in PHARMAC’s context. The general principle of involving consumers in
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budget or priority-setting (whether or not their proposals are adopted) can still be of value, whether the chosen approach adopts the CHAT tool or not.
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Case study 12:
Project title The Bristol Citizens’ Jury (United Kingdom)42
43
Overview of approach
Who?
Citizens Inform
X
Service Users/Consumers Involve Collaborate Empower
How?
Consult
X
Why? Democracy Better services Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning
2
Design
Delivery
Evaluation
X
When? Scoping
X --------------------------------------
Decision made
One- off
X
Fixed length
Ongoing
Description of the process/tool for engagement
Summary: Implemented by the Primary Care Trust in 2006, The Bristol Citizens’ Jury aimed to address the question “What are the priorities of the citizens of Bristol for research into the provision of primary and social care?” It is intended that the results of the jury would impact on health research commissioning on a broad scale. The jury resulted in a final report which identified the jurors’ priority questions for research and presented them according to the degree of consensus. Structure: The jury, comprising 20 members, came together for 11 consecutive meetings over a period of 16 weeks. Sessions comprised a full day introductory session, six witness sessions and four deliberative sessions. The process ended with a launch event for the jury’s final report and following this a steering group of jurors and professionals was formed in order to disseminate the report still further. Content: The first session, an all day introductory session identified key areas of
Gooberman-Hill, R., Horwood, J. & Calnan, M., (2008). Citizen’s Juries in Planning Research Priorities: Process, Engagement and Outcome. Health Expectations, vol. 11, pp. 272-281. 43 Report of the 2006 Citizens’ Jury on the research priorities for Bristol Primary Health and Social Care. By Baldwin et al. Available at: http://www.apcrc.nhs.uk/downloads/report.pdf Viewed on: 6 March 2009.
42
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interest allowing professionals in those areas to be identified and sourced. An oversight panel of interested parties was present throughout the sessions, providing guidance on the general areas of health and social care on which the jury should focus, as well as recommending witnesses for general areas identified by the jury. At the introductory session the facilitators first encouraged discussion about service provision followed by a discussion of the kind of knowledge needed to improve services. Six witness sessions were subsequently held to cover the key areas identified on the introductory day with twelve professionals present over the course of the sessions to provide expertise in the areas of discussion. For each witness session, the witness started by talking for ten to twenty minutes, jurors were given yellow cards which they were asked to show if they required clarification. Jurors then worked in small groups to identify questions for discussions, after which they reconvened and directed the questions to the expert witness. The four remaining deliberative sessions allowed the jurors to consider all the evidence they heard and to develop their recommendations. They began by sifting through the evidence presented to them, revising the priorities and then identifying questions for research. The questions were then looked at in detail to decide by unanimous opinion, which should be dropped and those to be included. Those questions not unanimously agreed upon were then voted on to produce priorities of majority, equally balanced and minority acceptance. A report was then produced from these recommendations.
Objectives
To determine the priorities of member of the Bristol community to ensure commissioned research is in-line with public opinion. The priorities of the citizens of Bristol in terms of primary health and social care research. Participants for the jury were selected from the Bristol City Council’s Citizens’ Panel. The panel comprises 2000 Bristol residents from all backgrounds and local geographic areas. Residents are randomly selected and invited to join the panel; with people selected on the basis of age, gender, ethnicity, disability and location to ensure the panel mirrors the population of the city. Twenty members
Information sought Selection of participants
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were selective to participate in the jury, purposefully selected from 191 panel members who expressed interest in the event. Involvement of different audiences Given participants were selected from the Bristol City Council’s Citizens’ Panel, it can be assumed that members from minority groups in the community had the opportunity to participate. It must be noted however that the panel is made up of community members who regularly share their opinion on community matters, so may exclude culturally and linguistically diverse members of the community who have difficulty communicating with administrative bodies. Resources required will • • • • • • A planning team (internal or external) Two facilitators (and preparation costs) Twelve expert witnesses and their preparation time (& associated gratuities) An oversight panel Meeting facility and catering costs Project and event management costs
Resources required
Similar to running a consensus conference, we would envisage the costs to run a Citizen’s Jury of 12 citizens would cost between NZ $50,000-$100,000. Strengths and weaknesses Allows differences in views between researchers, professionals and members of the public to be expressed and an exchange of information to take place. The introductory session allowed jurors to grasp the nature of the material addressed and to familiarise themselves with the process, before being asked to share their opinions. The total period of time over which the sessions were completed allowed jury members, who may have felt out of their depth, to gain a sufficient understanding of each area of material to have a valid input. The content of the witness sessions is determined by the jury, giving them a greater control over the final priorities. The overall jury structure was determined by a planning team separate from the jury, making the planning, budgeting and co-ordination of the jury easier. The author argued that power or control is not entirely delegated to the public because the jury does not have control over their structure or the process taken. It is possible that barriers such as time and accessibility limited the ability of some citizens to participate, possibly affecting the sample’s representation of the wider population. Some jury members were noted to feel that the opinions of those with better articulation carried more weight within the sessions, possibly resulting in an under representation of minority voices (using expert facilitators would reduce the chance of this occurring). The results of the jury rely on members grasping the concepts presented in enough depth to make informed recommendations, which may not always be the case. May be difficult to achieve the appropriate time balance between making the jury sufficiently accessible and having enough time for members to produce informed recommendations. Outcomes Difficult to determine the impact of the jury on long term broader research commissioning as sufficient time has not elapsed, however many individual
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jurors felt encouraged to continue participation in agenda setting, improving the relationship between the Bristol City Council and the public generally. Relevance to PHARMAC The priority setting nature of this mechanism mirrors the decision-making context of PHARMAC in that limited resources must be prioritised, if possible, to the satisfaction of public members. Within this mechanism jury member experienced the difficulty of reaching a consensus whilst considering the opinions of other members of the community, allowing them greater understanding and possibly empathy towards decision-making bodies. This mechanism also addresses the need to give community members sufficient time and assistance in understanding the somewhat complex subject matter which will be necessary for PHARMAC in any community engagement exercises they undertake in order to obtain fully informed public opinion.
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Case study 13:
Project title ChoiceWork Dialogue – The Future of Healthcare in Canada (Canada)44
45
Overview of approach
Who? Citizens How? Inform
× ×
Service Users/Consumers Involve Collaborate Empower
Consult
Why?
Democracy
2
Better services
1
Social capital
Economic development
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping ---
X --------------------------------Fixed length
Decision made
One- off
×
Ongoing
Description of the process/tool for engagement
Summary: The Romanow Commission on the Future of Health Care in Canada initiated the ‘ChoiceWork dialogue sessions’ from late January until early March 2002, to engage members of the public regarding future healthcare policy and reforms. The key advantage of this method was that the public were given the opportunity to ‘work through’ conflicting difficult choices in order to consensus on issues. The ChoiceWork dialogue method was developed by Viewpoint Learning and has been found to be particularly valuable on policy processes at an early stages of development, or on familiar issues where changed circumstances create new challenges that have to be recognised and addressed. Structure: Twelve dialogue sessions were held across Canada with three
Maxwell, J., Rosell, S. & Forest, P-G., (2003). ‘Giving Citizens a Voice in Healthcare Policy in Canada.’ British Medical Journal, vol. 326 iss. 7397, pp. 1031-1033. 45 Commission on the Future of Health Care in Canada. Report on Citizens’ Dialogue on the Future of Health Care in Canada, June 2002. Prepared by: Judith Maxwell, Karen Jackson, Barbara Legowski, Steven Rosell, Daniel Yankelovich, Pierre-Gerlier Forest and Larissa Lozowchuk. Available at: http://www.healthcoalition.ca/citizens'dialogue.pdf Accessed on: 5 March 2009.
44
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sessions held in each of the four regions, with 40 participants in each session (480 participants). The sessions were facilitated by teams of two professional facilitators trained for the project who followed a set format. Participants were asked to reflect on upon four scenarios regarding the future of the health care system, each with a core reform perspective under active discussion in Canada at the time. Critical choices and scenarios were identified prior to the dialogue sessions being carried out. A follow-up phone survey of results of the sessions was undertaken with 1600 members of the general public.
Content: During each of the four sessions participants were given four scenarios to use as their starting point. The scenarios were described for participants in a workbook given to them at the beginning of the session which included background information, the basic elements and key arguments for and against each scenario. This workbook was used by participants in both small groups and plenary sessions. The workbook was used to both define participants’ preferred visions of a future healthcare system and as well as to explore the actions and trade-offs they were prepared to take or support in order to achieve that vision. A questionnaire on citizen’s views of scenarios was given at the beginning and the end of the day. Sessions were videotaped and attended by observers who recorded the all sessions.
Objectives
To facilitate citizen engagement on complex issues, something previously thought to be unachievable to any valuable extent. To increase legitimacy of policy decisions by involving the public in the early stages of policy-making.
Information sought Selection of participants
The mechanism sought to gain insight into the value judgments of citizens by examining generalised trade-offs on important issues. Participants were English or French speaking Canadian citizens aged 18 years or over, excluding those working in the health care system, randomly selected to represent a cross-section of the Canadian population. As the sample was limited to those speaking one of the two primary languages of the population it can be assumed that no allowances were made to source culturally and linguistically diverse citizens. The report does note that the selection was randomised in order to obtain a cross-sectional representation of the population suggesting specific social groups were not excluded, intentionally or through recruitment flaws, from selection. A project of this size would require significant financial resources. It is envisaged that holding one session (with 40 participants) would cost in the order of NZ $50,000-70,000 (which would include event and project management costs, participant recruitment and gratuities, preparation of stimulus materials, external facilitator time, analysis and reporting by external facilitators, venue and catering costs). Participants were empowered by the process, increasing the public perceptions of policy legitimacy. The mechanism led to an increase in transparency and accountability for decision makers as results of dialogues were reported and distributed. Public attitudes towards policy-making were positively affected as participants experienced first-hand the difficulties in trading-off values. An increase in citizen engagement resulted from the process as administrative confidence in public participation following the success of the campaign increased.
Involvement of different audiences
Resources required
Strengths and weaknesses
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Significant monetary and time costs. Events such as this are typically difficult for people from disadvantaged, CALD or vulnerable backgrounds to participate in. Outcomes Several positive outcomes came of the ‘ChoiceWork dialogue’ campaign. Most prominently was an improvement in the relationship between policy-makers and members of the public, with an increase in confidence in public decision-making ability and in administrative policy-making processes. The results of the dialogue resulted in positive policy changes, confirmed through the follow-up survey with members of the public. This mechanism is particularly relevant for exploring strategic decisions, problem-solving, priority setting or exploring preferences or trade-offs. Given the associated expense, running such sessions would be most appropriate on a periodic or one-off basis, rather than as ongoing events. Key aspects of the methodology, particularly using scenarios and value trade-offs appear from the results to be valuable in increasing transparency and accountability as it allows citizens to partake in the ethical dimensions of decision-making.
Relevance to PHARMAC
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Case study 14:
Project title Consumer Participation in Accreditation – Consumer Surveyors (Australia)46
Overview of approach
Who?
Citizens Inform Consult Involve
Service Users/Consumers Collaborate
×
How?
Empower
×
Why? Democracy Better services Social capital Economic development
2
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning
1
Design
Delivery
Evaluation
×
When? Scoping ------------------------------------
X-
Decision made
One- off
Fixed length
Ongoing
×
Description of the process/tool for engagement
Summary: The Australian Council on Healthcare Standards (ACHS), as part of a broader campaign to involve consumers in the accreditation process of Australian hospitals, initiated four pilot trials of consumers working with or individually involved with surveying or reviewing hospitals from October 2000 until February/ March 2001. The pilot was successful, leading to a continued use of consumer surveyors as part of ACHS’s accreditation process. Structure: After recruitment, consumer surveyors attended a two-day training session conducted by ACHS for all new surveyors, they then joined routine surveyor teams, or individually completed an ACHS three or four day survey of a hospital. Consumer advisors were available to consumer surveyors from the ACHS to advise the surveyors on matters relating to consumer advocacy. Content: Ordinarily, ACHS surveyors are assigned one category of standards to survey. Consumer surveyors, however, were encouraged to work across all
Consumer Participation in Accreditation Project Report. Available at: http://www.participateinhealth.org.au/Clearinghouse/Docs/cfcaccredreport.pdf Sourced on: 16 February 2009
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areas of standards, as consumer elements exist in all standards. It was also acknowledged that despite employed surveyors being required to reach a consensus on accreditation, the opinions of consumer surveyors would be individually considered as they were coming from a different point of view. Much like a peer review, consumer surveyors had the opportunity to talk to patients within the facilities to expand on objective observations made. After completing the accreditation surveys, consumer surveyors took part in evaluation activities as separate workshops with hospital staff, consumer representatives, other surveyors and the ACHS. Objectives To bring a unique perspective to the accreditation of facilities by involving the opinions of consumers whose objectivity is not compromised by industry involvement. Observations of public members, who would presumably assess facilities from a consumer’s point of view, rather than from an administrative point of view. ACHS recruited consumers who were experienced in consumer representation, with some formal training from a consumer organisation; therefore, they were not necessarily members of the general public. Recruitment occurred through various methods with the most successful found to be through local consumer organisations as these participants received greater support from the organisation and the hospital. As involvement was limited to a handful of consumers, all of whom were required to have some form of training it can be assumed that isolated and minority social groups are not well represented. This is an assumption however, as the details of individual participants are not supplied. Cost considerations are not expected to be high, but would include: Training costs for consumer surveyors. This cost is initially high but would reduce over time as surveyors would assess numerous facilities without requiring further training. Administrative costs of reporting consumer surveyor findings. Strengths and weaknesses Consumer surveyors bring added insight to surveys of medical facilities. Consumer opinions were found to carry more weight in terms of convincing staff and administration of the need for change. Relatively cheap to implement compared to other forms of evaluation. Once implemented ongoing costs are minimal. The presence of consumer surveyors had a positive effect on existing surveyors who were encouraged to acknowledge and examine differing perspectives of facilities. Consumer surveyors were often unclear about what was expected of them in relation to consumer and other standards. Some facilities experienced a lack of clarity in terms of the role of consumer surveyors. It was felt that there was a lack of specific protocols in place to protect the privacy rights of patients being interviewed by consumer surveyors. There may be a problem in terms of the availability of trained consumers with experience in representative roles in health care. The time requirements of surveyors will also limit those willing to partake in the program. Limiting the consumers involved to those with representative experience
Information sought Selection of participants
Involvement of different audiences
Resources required
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severely limits the scope of the information gathered, possibly preventing some consumer issues from arising or placing too much emphasis on some that do. The ongoing use of the same surveyors may eliminate the difference in perspective they are intended to bring as they become familiar with the industry, possibly de-sensitising them to consumer issues. Outcomes In general it was found that facilities acknowledged that consumer surveyors brought new insights to the accreditation process. The pilot was extended with ACHS implementing consumer surveyors on an ongoing basis and expressing support for wider use of consumer reviewers and surveyors. Despite this mechanism being implemented to assess Australian medical facilities, it is possible that the same process be applied to reviews of PHARMAC’s strategic policies as well as individual decisions, possibly in conjunction with the existing PTAC. The mechanism ensures a high level of transparency; however, it does not provide information on general public opinions, but the insight of a few individual consumers which may not justify alterations to current practices. This mechanism allows for a review of existing practices to complement other mechanisms focused on participation in early priority setting and decisionmaking.
Relevance to PHARMAC
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Case study 15:
Project title General Report on Poverty – Social and Political Dialogue (Belgium)47
Overview of approach
Who?
Citizens Inform
X
Service Users/Consumers Involve Collaborate Empower
How?
Consult
X
Why? Democracy Better services Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery
2
Evaluation
X
When? Scoping One- off -------
X ----------------------------Fixed length
Decision made
X
Ongoing
Description of the process/tool for engagement
Summary: The Belgium Federal Government was the first to use the ‘dialogue method’ to prepare the 1994 General Report on Poverty, in partnership with citizens living in poverty and their representative associations. Specifically, the ‘dialogue method’ was used to establish the indicators which most adequately took into account the reality of poverty in all its complexity. Structure/ Content: The steps involved in applying the ‘dialogue method’ were as follows: 1. Social dialogue: Occurred between disadvantaged people and their associations and the representatives of local welfare organisations. Individual experiences were gathered via house visits and group meetings. The shared experiences and proposals resulting from this were then collated into a ‘dialogue compilation’. Consultative meetings then took place between a delegate of the citizens and representatives of the local welfare organisations to whom the ‘dialogue compilation’ is
Claeyes, A. Engaging the Poor in Policy-Making on Poverty and Social Exclusion in Flanders (Belgium). Available at: http://www.oecd.org/dataoecd/54/10/2537007.pdf Sourced on: 16 February 2009
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presented. A final text was then drawn up which contains both proposals and answers provided by the welfare representative. This feedback was then presented back to the broader community.
2. Political dialogue: After the social dialogue, further talks between the poor and their associations, representatives of local welfare organisations, and policy-makers occurred. Policy-makers prepared their answers, which were added to the final text. These answers were discussed/ explained in consultative meetings with stakeholders; dialogue continued throughout the implementation and evaluation of proposed answers.
Objectives
The project committee specifically aimed to provide disadvantaged people with the opportunity to discuss particular themes with government bodies, and ultimately, have input into the development of policy proposals. The 1994 General Report on Poverty project generally aimed to minimise poverty and social exclusion through citizen engagement, resulting in policy proposals to eliminate the structural causes of poverty.
Information sought
Information gathered was very broad, as the report covered a broad range of issues pertaining to poverty. Importantly, information collected included the opinions of disadvantaged citizens – having their voices heard can often be a challenge for such groups. Participants were limited to those members of the public who voluntarily attended the group meetings. As the target population was those living in poverty, participation was limited geographically by holding the meetings in impoverished communities. Information was also gathered via home visits.
Selection of participants
Involvement of different audiences
This project involved organisations engaged in community work as their connection to impoverished communities. This was seen to increase the chances of engaging with citizens, as participants were are less likely to feel intimidated or threatened when speaking with people they were familiar with or trusted. Not likely to be significant. To replicate this project, consideration would need to be given to costs for: Project management Coordination of meetings and invitation of participants Reporting (including responsibility for reporting) Whether an external consultant (with experience working with the relevant populations) would be engaged to manage the project and facilitate meetings
Resources required
Strengths and weaknesses
A bottom-up approach to policy change ensured that the views of the targeted population body have been heard. Two-stage approach meant that less impoverished, possibly less educated citizens were not engaging directly with policy-makers with whom they might not have felt they could effectively communicate with (or are comfortable interacting with) otherwise. Involvement of numerous associations and organisations assisted in producing greater transparency of the policy-development process. The opportunity for policy makers to respond to citizens’ written proposals allowed an understanding of government’s rationalisations and decision-making processes, possibly minimising resentment towards administrative bodies if the
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final decision did not ‘go their way’. Impoverished or disadvantaged communities may have limited knowledge of social structures (within this context), making it challenging to establish conditions for dialogue. The slow process of policy changes may lead to feelings of frustration from community members who may feel they have been ignored or misheard. The multi-faceted nature of the mechanism means increased citizen commitment, increased costs and increased time for policy-making. Limited to minority groups and communities rather than gaining a consensus from a general population. Outcomes Since the release of The General Report on Poverty, impoverished citizens’ involvement in associated organisations increased. It has also assisted in the development of several institutions aimed at minimising the effects of poverty including the Centre against Poverty, Social Insecurity and Social Exclusion in 1999. Links can be drawn between the targeted ‘impoverished’ citizens of Belgium seen in this case and disadvantaged or special needs groups in New Zealand, who may need to be individualised in terms of the mechanism used to engage with PHARMAC. Although quite complex in nature, this mechanism allows the views of those community groups who are more difficult to engage with, electronically or otherwise, to be heard and discussed.
Relevance to PHARMAC
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Case study 16:
Project title Calculating QALYs: Societal versus Patient Perspectives (United States)48
Overview of approach
Who?
Citizens Inform Consult
Service Users/Consumers Involve Collaborate
×
How?
Empower
×
Why? Democracy Better services Social capital Economic development
1
2
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping -------
× ---------------------------Fixed length
Decision made
One- off
×
Ongoing
Description of the process/tool for engagement
Summary: In 2000, the Academy for Health Services Research and Health Policy in the US was interested in exploring the effects of different methodologies in the calculation of Quality Adjusted Life Year measures (QALYs). The QALY they chose to explore was in relation to breast and ovarian cancer. The motivation was to explore differing effects of using the ‘standard gamble’ (SG) method of assessing patient preferences, or the increasingly popular ‘time trade-off’ (TTO) methodology. Structure & content: Sixty-three one-on-one interviews of around 45 minutes duration were conducted with women who fell into one of the following three groups:
Charlotte C. Sun et al., Preferences Using Standard Gamble and Time Trade-off: Societal Versus Patient Perspectives. (2000), Academic Health Services Research Health Policy Meeting. http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102272167.html Accessed 20 February 2009.
48
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1. Those with a personal and a family history of breast cancer or ovarian cancer; 2. Those with only a family history of breast cancer or ovarian cancer; and 3. Those with neither personal nor family histories of breast cancer or ovarian cancer. All participants were asked to evaluate 11 different health outcomes of breast and ovarian cancer prevention, screening and treatment strategies. Using the SG method, women were asked what ‘probabilities of perfect health versus immediate death [they] would be willing to accept to avoid each health outcome.’ Using the TTO method, women were asked to consider ‘how much time in perfect health [they] would be willing to give-up in order to avoid each health state.’ Objectives To evaluate the preferences of women at risk of breast or ovarian cancer. To evaluate the impact that using different methodologies to help calculate QALYs has on the data. Information sought The SG method is considered the ‘gold standard’ for assessing patient preferences since it measures preferences under conditions of uncertainty. However, the TTO method has increasingly replaced the SG method due to its ease of administration. Until this research was conducted, it was not known if these different methods led to the same results in cancer patients. Therefore, the research was conducted to assess how using different methodologies impacts data when calculating QALYs. A consecutive group of women who presented to the Anderson Cancer Centre’s (Houston, Texas) cancer genetic counselling and breast and ovarian cancer screening clinics. Being that this project was populated by women who presented at the clinics, it is assumed that no demographic targeting was conducted outside of the obvious screening for whether or not they presented with personal and/or family histories of breast cancer. However, an opportunity obviously exists for further segmentation or focus on CALD or other high-risk groups should it be deemed necessary. This project requires staff trained in the administration of either, or preferably both, methods of establishing patient preferences; also education in the calculation of QALY measures. Staff would need to be trained in interview techniques. To conduct 63 depth interviews (and assuming an external consultant was engaged to conduct these) costs would be in the range of NZ $40,000-50,000. Strengths and weaknesses Involvement of patient groups as well as control groups in the formulation of QALYs is a demonstrable example of practical citizen engagement. A patient-centred approach to interviewing allows researchers to explore complex and/or sensitive issues in detail and in a setting comfortable to the participant. QALYs provide a comprehensible formula to assist in making decisions, and provide a structure of efficacy to complex, multifaceted ideas such as health outcomes and quality of life. Awareness of different methodologies assists to ensure that QALYs are
Selection of participants
Involvement of different audiences
Resources required
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effective as possible. As this Case Study demonstrates, there is sometimes (although not always) variation between the outcomes of a standard gamble methodology and (the more frequently implemented) time trade-off methodology. Similarly, results can vary amongst patient populations since each have distinct preferences for outcomes of treatment. While the views of control groups can represent societal perspectives, their choices are frequently different from actual patients who are going to be impacted by policy decisions concerning specific treatment strategies. Outcomes The research findings were: Women recorded consistently higher rates of preference for all health outcomes and across all three groups (personal/family history of cancer; family history only; no history) when using the TTO method rather than when interviewed with the SG method. Given that, as previously mentioned, the SG method is considered the ‘gold standard’ as it accounts for uncertainty better than the TTO method, there are implications that need to be accounted for when either methodology is used. As a footnote, it is worth recording that the researchers say: ‘Comparisons of cost-effectiveness/utility profiles for healthcare strategies using different preference assessment methodologies may result in misleading conclusions.’ Furthermore, for 8 of the 11 health states, women with personal and family histories of breast or ovarian cancer gave higher preference ratings (under both TTO and SG methods) than the groups with either only a family history of breast/ovarian cancer or no history at all. While control groups may be used to represent the broader societal perspective, their preferences are clearly not the same as actual patients who are most likely to be impacted by policy decisions concerning specific treatment strategies. Relevance to PHARMAC QALYs can be useful in a couple of different ways: firstly, they provide key decision-makers with a formula-based economic model to aid consideration; and secondly, their formulation is usually through consultation and research with the public—thus encouraging participation. The benefit of engaging consumers in the development of QALYs is in the representation that it affords, with the caveat that consultation weighted towards non-sufferers risks being unrepresentative of the wishes of people who are, as previously noted, most likely to be affected by the policies that arise from the process; in this case, the QALY algorithm that helps determine whether a drug is funded or not. This particular case study also demonstrates a few key considerations in choosing and appropriate methodology, should PHARMAC wish to pursue engaging with consumers or citizens in the development of QALYs.
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Case study 17:
Project title Deliberative Opinion Poll - Southwestern Pennsylvania Program for Deliberative Democracy (United States)49
Overview of approach
Who? Citizens How? Inform
× ×
Service Users/Consumers Involve Collaborate Empower
Consult
Why?
Democracy
Better services
Social capital
Economic development
1
3
2
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping ---------------
×---------------------
Decision made
One- off
×
Fixed length
Ongoing
Description of the process/tool for engagement
Summary: In October 2005, the Southwestern Pennsylvania Program for Deliberative Democracy—partnering with America’s national public broadcaster, PBS—held a ‘Deliberation Week’, aimed at encouraging citizens in the region to discuss healthcare. While deliberative events had been held in the region during the previous year exploring national security and the global economy, in 2005 “Deliberation Week” focussed on a specific regional issue for the first time - a response to the Pennsylvanian State Senate’s proposed cuts to Medicaid. Structure & content: Deliberation Week comprised different facets of community engagement; central was the dissemination of information and community involvement in the project. To this end, partnerships were formed not with only PBS, but importantly with local media as well. The regional community television station, WQED Multimedia, aired programs throughout the
49
Southwestern Pennsylvania Program for Deliberative Democracy, Healthcare Poll, (2005) http://www.phil.cmu.edu/caae/dp/polls/oct05/index.html Accessed 17 February 2009.
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week addressing various aspects of healthcare, as well as providing further information on their website. Deliberation week was capped off with a day-long Citizen’s Forum in which a random sample of community members from Allegheny County who discussed, deliberated and then took a Deliberative Opinion Poll on Healthcare, supported in their decisions by consultation with experts. This was filmed and broadcast locally. Objectives • To try and reflect what the community as a whole would think about a particular issue or policy if that community had time and resources to become informed about the issue To encourage debate about and interest in healthcare in the community; and To increase the democracy and transparency of the decisions undertaken by the Senate.
• •
Information sought
Although the states must meet minimum requirements to qualify for federal funds, they have considerable leeway to structure their own Medicaid programs. When doing so, they have several unpalatable options: • • • • appropriate more money; tighten eligibility rules; reduce coverage; and/or, cut reimbursement rates.
A goal of this local deliberative poll was to assess mechanisms for implementing cuts that would minimise harm to the residents of Pennsylvania. Selection of participants Participants in the Citizens’ Forum on Healthcare were recruited from a random sample of Allegheny County residents identified for a forum on National Security held there in October, 2004. Of the 598 residents in this pool who were resampled for the Citizens’ Forum on Healthcare, 107 indicated that they would likely or most likely attend. About half of these actually attended on the day. Several demographic characteristics between the sample and the adult population of Allegheny County were identified. Participants in the 2005 deliberations were: ‘more likely to be female, older, and more educated than adults in the county. On the other hand, the distribution of race in the sample closely matched that of the county.’ Substantial resources are required, should PHARMAC wish to replicate this type of event. Coordination of relevant materials for dissemination via various forms of media; participation of a variety of experts; research professionals to conduct sampling, questionnaire design and analysis; also require venues and refreshments for the Citizens’ Forum. We would anticipate that costs would be in the order of NZ $50,000-70,000. By partnering with media broadcasters, a wide level of coverage and dissemination of information was able to take place across a number of forms of media, allowing the organisers to reach a much greater number of people than would have otherwise been possible. High level of transparency and democratic engagement with community. Deliberative events like this work best at engaging the community when the topics under debate are particularly relevant to members of the community. PHARMAC is a national body and therefore its level of consultation could potentially be wide-ranging.
Involvement of different audiences
Resources required
Strengths and weaknesses
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Likely to be expensive and require a large amount of coordination. Outcomes After deliberation, the poll opposition for a variety of Participants and interested had taken place and that a process. arrived at a broad consensus of either support or ways of managing Medicaid costs in Pennsylvania. parties could agree that wide-ranging consultation fair selection of the public had been included in the
Relevance to PHARMAC
A deliberative event such as this has excellent potential to raise PHARMAC’s profile and circulate information throughout the community, especially if partnered with a national or regional broadcaster as occurred in this particular case. Deliberative events are useful for exploring complex issues in detail and provide participants with the opportunity to debate. It is not necessarily essential for PHARMAC to present a representative geographic sample, as was the case in Pennsylvania; it could equally have been a sample reflective of PHARMAC ‘clients’—a random selection of people whose lives are impacted to a greater or lesser degree by PHARMAC’s decisions, or a combination of a variety of demographic groups. Furthermore, the information gained can be used to assess generally what members of a community hold to be important in terms of trade-offs around healthcare.
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Case study 18:
Project title Ethnic community stakeholders as partners in primary and secondary diabetes prevention (Australia)50
Overview of approach
Who? Citizens How? Inform
×
Service Users/Consumers Involve Collaborate Empower
Consult
×
Why? Democracy Better services
×
Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping -----------------------
×-------------
Decision made
One- off
Fixed length
Ongoing
×
Description of the process/tool for engagement
Summary: ‘Listening to Ethnic Communities about Diabetes’ is a project that focused on Type 2 diabetes by developing, piloting and evaluating culturally appropriate primary and secondary prevention health promotion strategies with Maltese, Filipino and Vietnamese communities in the municipality of Brimbank, on the outskirts of Melbourne, Australia. The authors of an article summarising this project note that: ‘One of the critical success factors for the project was that, while the project was grounded in a health promotion framework, the lead agency did not have a great deal of health expertise. Rather, the focus of its expertise was on relationships with ethnic communities.’
The project was led by the Migrant Resource Centre (North West Region) and supported by local community health centres, representing the desire for strong cooperation between industry bodies and ethnic community agencies. ‘Listening to Ethnic Communities about Diabetes’, won the 2003 Innovation and Excellence in Primary Health Care Award, in the Community and Consumer Participation category. The project has also being promoted as a model of best
Karantzas-Savva, E. & Kirwan, A. (2004) ‘Ethnic community stakeholders as partners in primary and secondary diabetes prevention’, in Australian Journal of Primary Health, vol. 10 no. 3
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practice in culturally and linguistically diverse (CALD) communities.
Structure & content:
The aims of the project were deliberately broad to allow for stakeholder input to determine the direction of the project. A steering committee—comprising representatives of three CALD communities as well as community health, GP and peak bodies in the health sector—was formed on appointment of a project officer. A major component of the role of this committee was to provide guidance in the development of strategies to address identified gaps for the three target communities. The key role that the committee were charged with fulfilling was overseeing and directing development of strategies that were culturally appropriate and lifestyle-relevant for the communities being targeted. Three main phases characterised the project's approach: a data collection phase, an analysis phase and thirdly, the piloting of at least one intervention for each of the targeted ethnic communities. Objectives • To improve the delivery of diabetes prevention and management services to CALD communities in the Brimbank local government area (LGA). • To enhance self-management of diabetes among people from CALD communities in the Brimbank LGA. • To engage the CALD communities in increasing understanding and access to diabetes prevention and management strategies and services in the primary care sector. Information sought Phase one of the project looked at identifying the particular and general needs for each community group, in relation to diabetes prevention and management, as well as general issues with diabetes health care access and provision. This included data collection designed to establish awareness of diabetes in the ethnic group. Instead of employing researchers to conduct the needs assessment, the consultancy was offered to the ethno-specific agencies involved in the steering committee. They were supported by formal training in focus group methodologies, and ongoing support from the lead agency. Members of the steering committee were drawn, as noted, from relevant community groups. In addition, 11 focus groups in were conducted with over 123 participants in total, again drawn from specific CALD groups. An important point to note is that, as the authors state: ‘at least part of the success of this project was in the way that it targeted particular communities, rather than trying to reach everyone. This makes for culturally and linguistically relevant initiatives that are not based on cultural stereotypes or generalisations.’ Involvement of different audiences Involvement of different audiences was key to the success of the project, and enabled through the partnerships with CALD organisations such as the Maltese Community Council of Victoria; Filipino Community Council of Victoria, and; Vietnamese Community in Australia/Victoria Chapter. The resources required depends upon what the subsequent pilot programs are. Obviously the coordination between the various groups, and allowing sufficient time to develop strategies based on the findings of the focus groups is very important, but also likely to be expensive or time-consuming. Coordination with ethnic media sources could result in expenditure on advertising as well. Many of the relationships created between ethno-specific agencies and health care providers were sustainable beyond the project's life. An example of this was the seeding grants offered to the Filipino community, which ensured links were made with dieticians from the local community health service that implemented
Selection of participants
Resources required
Strengths and weaknesses
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information sessions with community groups. Offers direct targeting of CALD citizens. Adaptable to variety of ethnicities and health issues. Reasonably cost-effective. Encourage partnerships with not organisations like Diabetes Australia. only community groups but also
Area of effect limited to CALD citizens being engaged. Direct engagement with community in formative process likely to be small. Listeners may have trouble associating PHARMAC with some of the tools involved (such as radio narratives), unless branding is clear. Outcomes The outcomes of this project were two-fold: practical and theoretical. The practical outcomes of the project were a number of pilot programs designed to inform CALD communities about ethnically significant health concerns. This was achieved in a variety of ways, e.g.: 1. Development of radio narratives played on Vietnamese radio stations to help disseminate information about diabetes. 2. Healthy eating resources for the Filipino community, which were publicized through newsletters and again through community radio. 3. Identification of peer leaders in the Maltese community and education programs instituted which aim to improve physical activity. The theoretical outcomes of this project were that a stakeholder-oriented approach to health promotion can work with culturally and linguistically diverse communities. However, as the authors suggest, ‘the key to success for this approach…is to have genuine community involvement throughout the project and to hold community stakeholders' input in the highest regard.’ Relevance to PHARMAC Learnings from this Case Study could be applied to PHARMAC’s work with Māori or CALD groups. PHARMAC has already identified a number of Māori health priorities, such as diabetes and cardiovascular disease; in fact, PHARMAC has already instituted a successful campaign (One Heart Many Lives) to increase awareness of cardiovascular disease in the community. This case provides further blocks on which PHARAMC can continue to build their engagement strategy. PHARMAC also emphasize the importance of Māori-specific media channels in advertising in their communications strategy.51 In this regard, this particular case offers further tools to build on PHARMAC’s current work in this area.
51
Implementing PHARMAC’s Maori responsiveness strategy, p. 15
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Case study 19:
Project title Consensus Conferences addressing genetically modified food (Norway)52
Overview of approach
Who? Citizens How? Inform
×
Service Users/Consumers Involve Collaborate Empower
Consult
×
Why? Democracy Better services Social capital
×
Economic development
2
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping -------
× ×------------------------------Fixed length Decision made
One- off
×
Ongoing
Description of the process/tool for engagement
Summary: The Norwegian Government was interested in exploring how citizens felt about the subject of genetically-modified (GM) food. A consensus conference is a forum in which laypeople are educated about a scientific discipline or issues, and create a consensus document reflecting their understanding and/or acceptance of the technology. Structure & content: Following two weekend seminars for training and preparation, a panel of sixteen lay people met for four days, heard addresses from fifteen experts and gave a consensus report at the end.
Objectives
To raise public awareness of and gain insight into attitudes towards GM food amongst lay persons. How the public views the introduction of genetically modified food, in the instance where they have the time and resources to become au fait with the
Information sought
52
Mørkrid, A.J (2001) ‘Consensus Conferences On Genetically Modified Food In Norway’ in Citizens as Partners: Information, Consultation and Public Participation in Policy-making. OECD.
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subject and make an informed decision. Selection of participants The laymen’s panel consisted of 16 people, 8 men and 8 women, aged from 18 to 72, drawn from various parts of the country and with different backgrounds. Members were not to have close links with occupations or organisations with established policies in the area of GM food. It is doubtful that a range of different audiences were targeted in this particular project simply due to the nature of the subject; however, there is obviously nothing to prevent specific selection for a conference that was more geared to the involvement of different audiences. Likely to be large. This project was budgeted at equivalent to $334,468 NZD. A follow up conference several years later was budgeted at $91,218 NZD (although there are various ways costs could be reduced if PHARMAC were to replicate something similar). This included, as the paper goes to some lengths to say, human resources amounting to 545 working days for project staff, laymen, experts and the facilitator (however, managing a similar event and exploring ways to reduce costs could be explored for PHARMAC, for example, less media exposure). A detailed breakdown of the timelines of each aspect of the project is included in the article. Strengths and weaknesses There were significant benefits relating to raising public awareness: • • • • around 100 press clips; the participants have been interviewed in 20 radio programs; the conference has been presented in 4 television programs; and, the final report from the 1996 consensus conference was sent to all members of parliament and all Norwegian ministries.
Involvement of different audiences
Resources required
Whether the conference has led to more democratically responsive decisions is difficult to assess. The debates and decisions in the Parliament were not coordinated with the conferences, but it is certain that the laymen’s report from the consensus conference was part of the material on which the Parliament based its discussions of a moratorium in October 2000. The positive impact on public opinion given Norwegian authorities took the initiative to involve citizens in the decision-making process on a sensitive and complex issue of public policy. Difficult to identify direct impact of lay panel on policy decisions Costs and human resources required Emphasis on the need to reach consensus may benefit those who already have a strong opinion in the matter at hand, and may lead to a less open discussion than was intended Danger of the facilitator influencing discussions and decisions more than is intended. This appeared not to be the case in this consensus conference, but makes the issue of ensuring the quality of the facilitator very important A laymen’s panel can never be taken to be a totally representative group because the selection process itself (based as it is on volunteers) narrows participation down to people who show a special interest in the matter at hand. Outcomes The conclusions of the consensus conference’s final report were conservative and supportive of the official policy.
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The authors note that a follow-up conference has done little more than get the topic of genetic modification back on the political agenda. Relevance to PHARMAC As with many of the tools described, a consensus conference could be an effective way to directly engage with affected citizens, where complex issues less suited to traditional techniques such as focus groups or surveys, can be explored in detail – given much of PHARMAC’s work is highly technical and complex, this kind of technique would be well suited. Key learnings could be obtained in observing the process participants went through in reaching their consensus. In addition, a consensus conference could be a good way to generate positive publicity for PHARMAC.
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Case study 20:
Project title e-Participation - Department of Foreign Affairs and International Trade website (Canada)53
Overview of approach
Who? Citizens How? Inform
×
Service Users/Consumers Involve Collaborate
×
Consult
Empower
×
Why? Democracy
×
Better services Social capital Economic development
1
3
2
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning Design Delivery Evaluation
×
When? Scoping -------------------------------
×-------
Decision made
One- off
Fixed length
Ongoing
×
Description of the process/tool for engagement
Summary: In early 2003, the Canadian Department of Foreign Affairs and International Trade (DFAIT) established a website as a channel for engaging Canadians in debate about revision of Canadian foreign affairs policy. This occurred in concert with other more traditional methods of including citizens (town hall meetings, roundtables, etc.) Structure & content: The website set up by DFAIT provided the following information:
• •
a dialogue paper; background information;
Gilbert Riley, C.(2003). The changing role of the citizen in the e-governance & e-democracy equation, Commonwealth Centre for e-Governance. Available at: http://www.tanzaniagateway.org/docs/Changing_role_of_the_citizen_in_the_E-governance_Edemocracy_equation_2003.pdf Accessed 20 February 2009.
53
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• • •
links and resources; terms of engagement; and 12 questions for discussion in an online forum or in one’s own time (links were marked ‘Answer/Discuss/View Answers’.
The site received 1.5 million hits and 500 submissions (deemed serious submissions), all of which were considered and analysed. The forums were supplemented by weekly updates of contributions that had been posted on the site; the final report and recommendations were also made available through the site. Objectives • Creation of multiple channels for dialogue and interaction; • partnership between government and civil society; • transparent dialogue; and, • active moderation of the research group discussion. Information sought Selection of participants Involvement of different audiences Input on foreign policy.
Free and open to all citizens with access to the internet.
Depending on rate and placement of advertising, this tool is capable of attracting a wide variety of different audiences dependent on availability of internet. In this instance, no particular targeting of specific groups was recorded in the literature; although this isn’t to say that it wasn’t attempted. Costs are not likely to be high relative to other mechanisms addressed in this report. Consideration should be given to costs for: • Web design, programming and online moderation to prevent conversation being ‘high-jacked’. • Participation by governmental parties: ‘If the process is to be seen as credible, it must be reciprocal.’
Resources required
Strengths and weaknesses
Likelihood of increase in competing ideas and voices. debate.
Encourage healthy
Forum for free sharing of information, all of which is capable of being monitored by PHARMAC—help address misinformation. Access to broad population. Central dissemination of information. Broadens consultative process. Lack of lead-up time (in this instance, four months). Requires broad advertisement to attract consumers: if public are not aware of forum, they obviously won’t be able to use it. Can be viewed as shallow, in the respect that it has been considered as not extensive enough by some critics. Requires monitoring for internet trolls/aggressive behaviour. Needs regular input by PHARMAC in order to be seen as effective, otherwise will be viewed as simply a PR exercise.
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Outcomes
• There were a total of 63,000 visits to the site, 1.5 million hits, 25,000 downloads and 7000 submissions, 500 of which were considered serious—as previously noted. 2000 individuals registered to participate in the online discussions. • Fostering of civic literacy, with abundant information and background materials provided, and time for deliberation.
Relevance to PHARMAC
One of the key aspects of consumer participation for PHARMAC is engagement with decisions. Giving users a forum for engaging with PHARMAC over their decisions may assist in the prevention of disenfranchisement felt by the community whose submissions are ultimately turned down (for example, questions posted on the website for consumer response and debate). Increasing engagement opportunities via PHARMAC’s website could be a useful undertaking, however such activities are limited only to those with access to the internet (although this continues to increase). For those without internet access, alternative ways to become involved should be highlighted.
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Case study 21:
Project title Standards New Zealand – Standards Development Committees & public comments process
Overview of approach
Who?
Citizens Inform Consult
Service Users/Consumers Involve Collaborate
X
How?
Empower
X
Why? Democracy Better services Social capital Economic development
1
(Rank 1 or 2 to indicate primary or secondary drivers) What? Planning
2
Design
Delivery
Evaluation
X
When?
X
X
Consumers are involved throughout the Standards development process One- off Fixed length Ongoing
X
Description of the process/tool for engagement
Summary:
Standards New Zealand’s remit is to manage the development and distribution of Standards across a wide variety of sectors, including the health sector. In developing each Standard, Standards New Zealand forms Standards Development Committees. These Committees comprise representatives of those most likely to be affected by a Standard. These include ‘sector experts’ and consumers. Consumers and citizens also have the opportunity to be involved in the Standards development process through making a written submission during the public comment phase.
Structure & content:
Standards New Zealand’s executive team refers to their role in Standards development as being more like facilitators than adjudicators.54 To this end, at the beginning of the process of Standard development, a Standards Development Committee (Committee) is formed to act as the ‘engine room’ for the development process. The Committees comprise people who will most likely be affected by the Standard under development. For instance, Committee members could come from regulatory bodies, relevant research areas, interest
54
Chin, Debbie (Standards New Zealand CEO). Personal communication. June 11, 2009.
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groups, or be classified as ‘experts in the field’. Additionally, Committee members include citizens/consumers as lay members. After the Committee is satisfied that the scope and objectives of the Standard under development are clear, the proposed content is drafted (usually by nominated individual members) for the Committee to consider. During this development phase, Committee members refine and elaborate on the draft Standard through meetings, conference calls, and working groups. Driven by consensus, once a draft version of the Standard is agreed upon, it is widely advertised and publicly disseminated through a variety of means during a public comment period. These include the Standards New Zealand newsletter Touchstone, which in its online format has RSS functionality—this allows individuals to receive updates on Standards related to their areas of interest (e.g. construction industry, health, consumer safety) as soon as they become available. Standards New Zealand also distributes information through email mailing lists to individual stakeholders and organisations (for further dissemination to their employees). Submissions from the public are usually accepted for a period of eight weeks, depending on how complex or contentious the Standard being developed is. Every submission that the public submits to the committee is examined and debated during the consensus phase of the Standard creation process. Final approval is then sought from the Standards Approval Council prior to publication. Although approximately 50 people work directly for Standards New Zealand, over 2,000 volunteers comprise the Committees that develop Standards solutions. Objectives To create a consensus-driven, inclusive process that promotes the widest feasible involvement of the public in the creation of Standards. As a member of a Standards Development Committee, consumers/citizens are required to input into the content of the Standard under development by their Committee, representing the layperson’s point of view. As part of the public comment phase, comments on draft Standards are sought from a broad a section of the community. Selection of participants As mentioned, Committee members are selected based on their involvement with the subject being discussed, and are frequently nominated by advocacy groups, regulatory bodies, and by nomination of the Committee members themselves. As part of the Standards development process, in addition to involving members of advocacy groups, it is understood that Standards New Zealand at times conducts workshops with members of the broader community. This may be utilised where, for example, access to affected groups is difficult due to disability, cultural background or limited communication channels. Detailed protocols have been established to guide the Standards development process. Committee members are volunteers, although it is suspected a budget for materials and travel would still be required. Advertising costs would be incurred in publicising public comment phases. Community workshops would incur costs to plan and facilitate, although these would vary depending on workshop size and scope. Having consumers/citizens as members of a Committee with decision-making ability is empowering for those consumers/citizens The Standards development process is consensus-driven
Information sought
Involvement of different audiences
Resources required
Strengths and weaknesses
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A high degree of transparency Whilst Committee membership is empowering, the selection of participants needs to be undertaken with care, to ensure they are relevant to the Standard being discussed Substantial investment of time required from Committee members, who are volunteers Outcomes Standards New Zealand regards the current process as highly successful, pointing to the extent of involvement by the community and their position as an independent body as key reasons for public trust in their work.55 The Standards New Zealand model is interesting in that it empowers citizens/consumers with a degree of decision-making power that is not reflected in many of the other models of engagement and participation examined in this report. Other engagement models involve members of the public in the decision-making process; however, invariably, the final decision has rests with the agency or government. Although, regardless of the level of ‘power’ assigned to citizens/consumers in a decision-making process, the decision-making process can be enhanced through incorporating the perspectives of consumers/citizens. PHARMAC’s decision-making processes incorporate input from the Pharmacology and Therapeutics Advisory Committee, and consumers through the consultation process, with final decision-making power resting with the PHARMAC Board. We are not necessarily recommending that PHARMAC adopts a similar approach to Standards New Zealand by including board members who are laypersons; we acknowledge such powers are guided by legislative and/or other requirements. Perhaps the most useful aspect of the model is in demonstrating the extent to which citizens are willing and can become part of the decision-making process.
Relevance to PHARMAC
55
Chin, Debbie (Standards New Zealand CEO). Personal communication. June 11, 2009.
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6
ELEMENTS OF EFFECTIVE CONSUMER/CITIZEN ENGAGEMENT
The theory of consumer/citizen engagement can be considered a relatively new response to an old idea: that of democratic participation in public policies and processes. The development of new means of engagement is, according to some theorists, the result of a ‘democratic deficit’56 due to the perceived increasing distance between government and citizens. Privatisation,
increased expectations of service quality, cultural and ethnic diversification in the community (and moreover a greater recognition of difference), as well as a declining trust in public institutions throughout the end of the 20th century57, have all contributed to a perceived sense of public disenfranchisement with the democratic process.
6.1
Principles for effective engagement
There are many models of best practice in consumer/citizen engagement available in the literature and online, most of which revolve around a set of basic principles: There needs to be a genuine commitment, from the highest level in the organisation, to engage in a partnership with the community even if that means accommodating views contrary to the organisation’s own. This is not to say that the community will necessarily want to be involved in every level of decision-making; one of the caveats of consumer/citizen engagement is that consumers and citizens can be ‘often reluctant’58 to participate. However, neither do consumers/citizens want to be preached to: they will only
Patrick Bishop and Glyn Davis (2002) ‘Mapping Public Participation in Policy Choices,’ Australian Journal of Public Administration, vol. 61(1) p.15 57 Kenneth Newton and Pippa Norris, ‘Confidence in Public Institutions: Faith, Culture or Performance?’ in Susan J. Pharr and Robert D. Putnam, Disaffected Democracies, 2000 Princeton; Princeton University Press. pp. 52-73 58 Gramberger, Marc (2001). Citizens As Partners: OECD Handbook on Information, Consultation and Public Participation in Policy-Making. OECD Publishing. p. 93
56
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want to be involved, and buy-in only obtained, if they feel they are being listened to, and have the opportunity to participate should they desire.59 All significant stakeholder groups should be represented. Public participation is a dialogue: how participants’ input affected the decision should be communicated to them. There is no one method of engagement that is always better than another. As such, a mix of methodologies can often offer the greatest efficacy. In addition, the OECD has developed a comprehensive guide for governments (OECD Handbook on Information, Consultation and Public Participation in Policy-Making60), which provides government officials ‘with practical assistance in strengthening relations between governments and citizens’61. Whilst it sets out what the OECD had adopted as principles for effective
informing, consulting and engaging with citizens, it also provides a useful overview of different practices which may be adopted in informing, consulting or engaging with consumers/citizens, as well as tips and guidelines to follow in this area. Given its comprehensive nature, it is not feasible to summarise the information presented in the report here; however, we highly recommend that PHARMAC staff access and review this document. In light of the range of tools and methodologies available to government agencies seeking to encourage consumer/citizen engagement, there is a need to find a way of ensuring that the particular tool being used is effective. This is recognised as a gap in citizen engagement and participation research; however, there are some excellent guidelines to evaluating different forms of consumer/citizen engagement publicly available, such as the OECD-authored Evaluating Public Participation in Policy Making
62
(this accompanies the Handbook referred to
above). As this document indicates, the necessity of evaluation is borne out in all methods of consumer/citizen engagement, from information provision through to consultation and engagement; evaluation is obviously a primary function of government where the need arises to justify the use of public funds.
Moore, K. (2004) Consumer and provider partnerships: what makes them work, Canberra: Consumer and Provider Partnerships in Health Project. pp. 33-34 60 Gramberger, M. (2001) Citizens as Partners: OECD Handbook on Information, Consultation and Public Participation in Policy-Making. OECD Publications Service. 61 Ibid. p.8. 62 Caddy, J (ed.) (2005) Evaluating Public Participation in Policy Making. OECD Publishing
59
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In addition, the American National Standards Institute released a set of Program Evaluation Standards in 1994 which have been widely adopted as a general guide and reflection of best practice in the international evaluation community; being such, they are relevant to citizen participation and reflect four attributes: utility, feasibility, propriety, and accuracy.
63
An example of one aspect of such an evaluation is to start with an identifiable goal: Increase the ability of citizens and their organisation to participate in public policies. And identify legitimate indicators of this goal, which might be: The quality of citizens’ proposals and recommendations (grades obtained from
questionnaires answered by public officials and other third parties). Satisfaction with the public service and consultation through key stakeholder interviews with consumers. Increased rates of participation: submissions, dialogue, consultation etc.
6.2
Representation in participation and engagement
As noted above, one of the most commonly referred to principles of effective engagement is ensuring all relevant stakeholder groups are represented in any engagement activity that a public agency undertakes. It is noted this may not be relevant for all engagement projects; for instance, an agency may wish to understand the views of a particular subsection of the population, such as patients of a particular special needs health clinic. However, in projects seeking to engage broader groups of citizens and stakeholders, it is an important consideration. Put simply, the term ‘representativeness’, in the context of social research, implies that the sample of research participants comprises a sufficient number of participants with a mix of characteristics that reflects the whole population of interest. For example, for a population of 5000 people, a sample size of 1176 will be required to be considered ‘representative’ of the population (with a 95% confidence level and a confidence interval of 2.5). Unless large numbers of consumers/citizens are involved in an engagement or participation activity, the quantity of people involved means that they are unlikely to be ‘representative’ of the population in a traditional statistical sense. This is because, in most cases, the largely qualitative nature of most engagement and participation techniques makes a representative
63 Evaluating Public Participation in Policy Making, p.56
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sample impractical. One notable exception of this is the CaliforniaSpeaks project (presented as Case Study #5 of this report) which aimed to recruit a sufficient number of people to ensure the participants involved statistically reflected the population of California. In most instances,
however, ‘representativeness’ in engagement and participation can be best obtained by attempting to ensure that all relevant stakeholder groups, or groups within the population of interest, are represented amongst participants. How, then, do consumers/citizens become involved in participation and engagement activities, and what is their motivation to take part? Research undertaken by Ipsos MORI explored the issue of whether citizens or consumers actually want to engage. This UK research examined whether London Borough residents were interested in extending a series of community forums known as Community Partnerships to other areas of the Borough. As set out in Figure 2 below, most participants favoured extension of such forums (82% supported); however, a much lesser percentage (26%) reported that they would be personally interested in being involved. As it turned out, when the forums were run, only 2% of residents actually turned up. Thus, whilst there is not a large body of work examining citizens’ attitudes towards engagement, the above research suggests it is important when considering running a consumer/citizen engagement activity to carefully consider whether citizens/consumers would actually take the time to engage and on what issues they would actually like to be engaged about (preliminary research with citizens could guide an understanding of this).
Figure 2: Interest in extending and attending Community Partnership forums in the UK (Source: Ipsos MORI)
Q Q In principle, would you support or oppose extending Community Partnerships to other parts of the Borough? And would you personally be interested in getting involved?
Support
Don’t know/no opinion No, oppose
6% 12%
Involvement
Don’t know Depends
18% 2% 26%
Yes
Yes, support
82%
54%
Base: All residents (1,021)
Base: All resps who support the idea (835)
No
How then, do government agencies ensure that their citizens become involved in participation and engagement activities, especially if many citizens do no know about opportunities for engaging with government, or are reluctant or have little interest in engagement?
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In order to answer this question, it is useful to consider the ‘Triangle of Engagement’, as developed by John May in 2006. May developed his ‘Triangle’ in response to a perceived need to build upon the work of Shelly Arnstein and David Wilcox (the ‘ladder of participation’, as set out in Section 3 of this report), by creating a model of participation that reflected the needs of participants themselves, rather than the needs of the agency doing the engaging. Figure 3 below presents May’s Triangle of Engagement64. As May describes, the shape of the triangle is determined by two properties. Firstly, it rises from the base to the apex, where the level of participant engagement increases moving towards the apex (thus, the apex represents the highest degree of participant engagement, whereas the base reflects the lowest degree of engagement). Secondly, the width of the triangle corresponds to the relative number of
citizens in the population willing to be engaged at each level. May’s model implies that at the apex of the triangle, where engagement is highest, fewer people are willing to engage (reflecting what May describes as ‘the usual suspects’ or the ‘faithful few’ – the most committed citizens and those most willing to be engaged). In contrast, the majority of the public fall at the base of the triangle, and will only engage ‘if and when the issue is sufficiently pressing and/or it is on their doorstep’.
Figure 3: The Triangle of Engagement
Thus, a key challenge for government agencies in choosing how to best engage with their citizens, as well as selecting the optimal method of engagement, is deciding whether or not they would like the ‘vocal minority’ to take part (located at the apex of the Triangle of
May, J. (2006). Ladders, stars and triangles: Old and new theory for the practice of public participation. International Journal of Market Research. 48(3).
64
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Engagement), or whether the views of the broader public are sought.
This will, of course,
depend on the reason for engaging, as well as the engagement technique to be adopted. However, one way to encourage more members of the broader public to take part is to adopt a social research approach, where participants are ‘recruited’ to take part in a broader study, and provided with incentives to take part (such as a monetary payment of donation to a favourite charity on the participants’ behalf). As an example, in work undertaken for a Victorian
Government agency in Australia, Ipsos-Eureka used a social research recruitment agency to recruit a broad range of members of the public to attend a series of workshops exploring ways to engage the community on the issue of interest. Our clients expressed surprise that the
participants on the day had views to provide that were broader and different to what they were used to hearing from the vocal minority who attended town hall-style meetings, thus demonstrating the importance of recruitment technique and the variety of participants’ views and opinions likely to be uncovered in engaging with a broader cross-section of people. To ensure that different groups within the population are represented in an engagement activity, a variety of tools or approaches may need to be adopted. For instance, should an
agency wish to obtain the views of the broader population via a workshop or deliberative-style forum, certain segments of the population may find it difficult to participate (such as the ill, the disabled, full-time workers, the elderly, carers or people with small children, or people with non-English speaking backgrounds). In this instance, it would be worthwhile considering
supplementing the workshop or event with targeted individual or smaller group consultations with such special needs groups, to ensure that they too had the opportunity to ‘have their say’. As noted by the Centre for Culture, Ethnicity and Health (Melbourne, Australia), the most effective participation approaches will involve a ‘range of different strategies, with different purposes and different outcomes, which can contribute to a variety of aspects of the organisation’65.
6.3 Consumer/citizen engagement and disadvantaged/special needs communities
As highlighted above, it is clearly more difficult for some members of the community (such as people with disabilities, those with culturally and linguistically diverse (CALD) backgrounds, the homeless, young people or the elderly) to participate in certain forms of consumer/citizen engagement. Involve, a UK organisation specialising in public participation in health care research, acknowledges that ‘special efforts need to be made to avoid excluding certain people
65
A Practical Guide to CALD Consumer Participation. Centre for Culture, Ethnicity and Health, Victoria, 2005. Downloaded from: http://www.ceh.org.au/downloads/CALD_Consumer_Participation.pdf on 26 May 2009.
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by accident or lack of sufficient care’.
They note that this can seriously undermine the
legitimacy and credibility of any process and of participatory practice in general[2]. How to best engage with people from disadvantaged or special needs backgrounds has been the subject of a large collaborative research study completed in 2008 at the Swinburne Institute for Social Research in Melbourne[1]. The study examined how consultation and
engagement with what they termed as the ‘hard to reach’ is currently practised by Victorian council. Adopting a case study approach, the Community Consultation and the Hard to Reach research project highlighted various challenges and considerations that can be applied when working with special needs and disadvantaged groups: Identifying relevant population groups for inclusion in the engagement or participation exercise (this could be done through examination of appropriate socioeconomic data for a particular community, if an agency is unfamiliar with the make-up of that community); Understanding the characteristics and needs of the population of interest; Overcoming prejudice (For instance, agency staff may hold negative assumptions about the groups they are trying to consult with, including the perceived attitudes of those groups towards the engagement process. attitudes and assumptions); Adapting consultation methods to be more inclusive and reducing barriers to participation (for example, producing communication materials in multiple languages, providing transport to and from venues); Choosing appropriate locations for participation (such as in-home for a full-time carer of a person with a disability, a venue with wheelchair access for participants who use a wheelchair, in schools or other non-intimidating environment for young people); Using appropriate and innovative consultation methods, tailored to the groups that the organisation is seeking to involve; As such, staff need to be cognisant of their own
[2]
Involve (2005) People & Participation: How to put citizens at the heart of decision-making. Author: London. Can be downloaded from: http://www.nhscentreforinvolvement.nhs.uk/docs/P0012%20%20PeopleandParticipation_involve.pdf (as at 4 March 2009) [1] Brackertz, N. & Meredyth, D. (2008). Social Inclusion of the Hard to Reach: Community Consultation and the Hard to Reach – Local Government, Social Profiling and Civic Infrastructure. Final Report. Hawthorn, Victoria: Swinburne Institute for Social Research. Downloaded from: www.sisr.net/cag/docs/HardtoReach_main.pdf on 16 February 2009.
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Negotiating ‘access’ to sensitive populations (e.g. the homeless), and drawing upon the experience and resources of government staff and community networks to promote consultation processes (for instance, for particularly sensitive populations, approach community organisations first and approach members of the target population with someone familiar to them); Managing vocal special interest groups (this could be done, for example, by encouraging the participation of people who support a particular proposal, so the participation event is not dominated only by those who are strongly against it); and Creating trust in government authorities – many citizens in special needs groups are distrustful of authorities and may have had previous negative experiences in dealing with those in leadership positions. The development of ongoing relationships with participants in engagement activities can encourage dialogues between government and citizens and over time create greater trust in government by its citizens. In addition, the Centre for Culture, Ethnicity and Health has released a fact sheet on their website outlining ‘A Practical Guide to CALD Consumer Participation’66, including
recommendations for how to involve or consider CALD participants in Boards of Management, consumer planning days, project reference and steering groups, consumer advisory groups, focus group discussions, information sessions and printed materials.
6.4
Māori and engagement and participation
Ensuring significant Māori representation and participation within PHARMAC has been identified as one of the goals of PHARMAC’s 2007-12 Māori Responsiveness Strategy. Although some of the Case Studies set out in Section 5 of this report have included examples of where government agencies have engaged with the Māori community (refer to Case Studies #1, #2 and #6), the paper The participation and engagement of Māori in decision-making processes and other government initiatives: A literature review prepared for the Electoral Commission (Full report)67 provides a comprehensive discussion of Māori engagement and participation in government decision-making (with a view to increasing Māori electoral participation).
66
A Practical Guide to CALD Consumer Participation. Centre for Culture, Ethnicity and Health, Victoria, 2005.
Downloaded from: http://www.ceh.org.au/downloads/CALD_Consumer_Participation.pdf on 26 May 2009. Alliston, L. & Cossar, D. (2006). The participation and engagement of Maori in decision-making processes and other government initiatives: A literature review prepared for the Electoral Commission. Research New Zealand
67
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6.5
e-Participation
e-Participation is a growing phenomenon in the public sector of many countries around the world, in both develop and developing economies. It can be described as ‘the movement of governments online to deliver their services and programs, to provide government information, and to interact with the citizen, all electronically.’68 The internet has been used, more or less successfully, as a repository for information by government services for years. better informed citizenry.
69
In this respect, it’s a useful contributor to the creation of a
With the shift towards e-governments, we are starting to see a
further progression to elements of e-democracy and engagement online. As Clift notes:
‘Providing timely, enhanced information access should be a core e-democracy goal of government…This experience is beginning to build a new kind of civil servant who serves the citizen online from the citizen’s perspective rather than just being accountable to a single agency in terms of expressing the [agency’s] view of itself to the world. These special collaborative online
directory efforts that serve groups or topics (i.e. seniors, youth, or health, new child, etc.) are building cumulative knowledge and collaborative multi-agency working clusters.’70
While some may feel that the foregoing simply represents a new form of information dissemination (and therefore lacking in any genuine change in the way government relates to its citizens), the interactivity of the internet provides implications for this new way of communicating that are somewhat broader than more traditional forms of communication. For example, in 1999 the Danish Government solicited proposals for an ‘IT Lighthouse’; the idea of which was to build a set of government-related services online, and to ‘build it high enough to be seen by other regions and countries, and at the same time provide a source of illumination for the citizens living nearby.’71
Gilbert Riley, C. (2003) The changing role of the citizen in the e-governance & e-democracy equation, Commonwealth Centre for e-Governance. Available at: http://www.tanzaniagateway.org/docs/Changing_role_of_the_citizen_in_the_E-governance_Edemocracy_equation_2003.pdf p. 3 69 Gilbert Riley. p. 56 70 Clift, S. (2001) E- Governance to E-Democracy: Progress in Australia and New Zealand toward Information-Age Democracy, Commonwealth Centre for Electronic Governance. Available at: http://www.publicus.net/articles/aunzedem.html 71 Vores Kommune: http://www.betasite.dk/vores%2Dkommuneuk/Default.asp?SideID=3&ID2=3
68
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One of the most interesting ideas that respondents to the Danish tender came up with was a personal service site—comparable to a personalised webpage like iGoogle. Each citizen who
wished to access local government services and information through a personal portal was able to quickly and easily set one up. Citizens could then ‘tag’ areas of interest to them—for
example, public works or primary education services in the area—and receive notifications whenever issues that were relevant to their field of interest came up on the public agenda. Thus, they had a central portal from which they could receive information and communicate directly with their elected representatives, as well as access information of private interest, such as the progress of their personal cases or submissions.
While the area of e-participation provides numerous such opportunities for engagement, adoption of e-participation by government agencies is unlikely to occur without support of the relevant government to ensure it is promoted correctly. Riley writes:
‘If government agencies truly desire to engage the citizen in online debate and citizen consultation, marketing programs will be necessary to bring people into the consultation process, including not only the creation of web portals to allow people to take part, but to secure enough promotion of them for citizens to learn of their existences…The necessary human and financial resources must be allocated so that thorough and proper consultation and ease of engagement may take place, combining the use of online and offline tools.’
72
72
Riley, pp. 93-94
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7
CONCLUSIONS AND IMPLICATIONS
PHARMAC is currently practising consumer and citizen engagement in a number of ways. Members of the public can make an application to have a medicine listed on the Pharmaceutical Schedule. They can make submissions as part PHARMAC’s consultation process as part of its decision-making processes concerning applications for medicines to be included on the Schedule (including the opportunity for members of the public to join PHARMAC’s Consultation Database). They can also write or email PHARMAC, or sign up to electronic updates on a range of issues. Further, the Terms of Reference for PHARMAC’s Consumer Advisory Council includes provision for the CAC to engage with the broader community. In both the health sector and more broadly, there has been an emerging trend in recent decades of government agencies throughout the world seeking and implementing more innovative and constructive ways to engage with citizens in their decision-making processes. Whilst ‘informing’ and ‘consulting’ with consumers and citizens certainly still have a place in public participation, ‘involving’, ‘collaborating’ and ‘empowering’ citizens (the last three ‘types’ of engagement on David Wilcox’s ladder of participation) are forms of engagement which allow the public to make a more substantial contribution to government policy development and decision-making. As addressed in Section 6 of this report, consumer/citizen engagement offers many benefits, including: emphasis of the role of citizens as agents of social change and increasing community ‘buy in’; allowing for provision of local knowledge about what works and does not work at a local level; it provides for more detailed and deliberative exploration of issues than would be achieved through traditional consultation and research methods; it provides for exploration of the different perspectives of citizen, consumer/service user and taxpayer that the public can hold; and lastly, it sends the message that the government agency is serious about listening and involving members of the public in the processes of policy development and service improvement. Findings from consumer/citizen engagement activities can offer a more nuanced and more subtle way of seeing the world, as it appears to consumers/citizens. The approaches or
mechanisms involved in citizen engagement enable the agency and the consumers/citizens to
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have a dialogue that they have never had previously, thus increasing their engagement with each other.
7.1
Mechanisms for citizen engagement
The
There are myriad mechanisms and tools for undertaking consumer/citizen engagement. case studies presented in this report have adopted the following techniques: Citizen’s Jury or Consensus Conferences; Participatory budgeting workshops; Dialogue sessions and deliberative events/workshops; Online deliberative forums; Online panels of citizens; A Citizens Council; Consumer surveyors; Consultation meetings; Partnering with CALD community stakeholders; Patient interviews; A citizens’ editorial board; Consumer/citizen members of committees with decision-making power.
The key focus of this Review was to examine different ways consumer/citizen engagement has been practised, both in New Zealand and around the world, with a focus on decision-making in the health sector. The case studies provide a wealth of ideas for PHARMAC to consider in
undertaking future consumer/citizen engagement and participation activities: As demonstrated in Case Study #8 (Consumer-Designed Service Information Hubs), the South West Area Health Services Consumer Reference Group improved the way it went about designing a new service by conducting research with members of the broader community. There is capacity for PHARMAC’s Consumer Advisory Committee to adopt a
similar approach by seeking the views of consumers/citizens in going about its work. Here, there are a number of engagement tools the CAC could explore.
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Establishing a Citizen’s Council along similar lines of NICE’s Citizen’s Council (Case Study #10), in our view, is highly applicable and relevant to PHARMAC. The approach enables ‘real’ citizens (as opposed to consumer representatives or experts in consumer advocacy) to explore and debate the complex issues inherent in PHARMAC’s work and to gain the consumer/citizen perspective on particular areas of interest (for example, QALYs). We
consider there is potential for a Citizen’s Council and PHARMAC’s CAC to work alongside each other, provided each entity’s role was explicit. Case Studies #9 (Public Dialogue Sessions), #1 (Bioethics Council Pre-birth Testing Project), #5 (CaliforniaSpeaks) and #17 (Southwestern Pennsylvania Deliberative Poll) adopt deliberative-style research. The nature and length of deliberative workshops (from 3-6 hours) allows for a deeper and richer exploration of issues than would otherwise be possible with conventional focus groups; participants are given more opportunity to deliberate and explore issues in detail. We see these types of sessions as being highly
relevant to PHARMAC’s work, which involves highly complex and emotive decision-making processes. Deliberative events and workshops would also be useful to PHARMAC in
engaging consumers/citizens in strategy and policy development processes, as well as consumer preferences and trade-offs. We see Citizen’s Juries and Consensus Conferences (as set out in Case Studies #19 and #12) as potentially less valuable than deliberative-style workshops or dialogue sessions, given they typically involve a lesser number of participants and are less practical and more expensive to implement (as they take place over multiple days). Citizens Juries differ,
however, from deliberative approaches in that they require participants to reach reasoned agreement on the issue being addressed. Jury members can select ‘expert witnesses’, as in a traditional court room, who they would like to hear from during the jury process, to assist them with reaching their decision. Patient stories and interviews (as set out in Case Studies #3: Ceredigion NHS Trust Patient Stories and #16: Calculating QALYs – societal versus patient perspectives) can be beneficial in understanding in detail how a PHARMAC policy or decision affects individuals in the community. Adopting a person-centred approach here could be highly valuable – this
approach puts the participant at the centre of the research and is founded on principles of inclusivity and flexibility. Using a person-centred approach, the interviewer ‘goes to the
participant’ and engages with them on their own terms, with the method tailored to meet the needs and interests of the individual. Person-centred approaches are typically useful for research where conventional methods may unintentionally exclude some people from taking part (highly likely in health care research) and for understanding individual or family needs, preferences and motivations in detail.
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Case Study #18 (Ethnic Community Stakeholders as Partners in Primary and Secondary Diabetes Prevention) provides a model for engaging with disadvantaged, special needs or CALD groups. This could potentially be applied to PHARMAC’s work addressing consumer education. The Citizens’ Editorial Board (as set out in Case Study #4: Swansea NHS Trust Editorial Board) provides a valuable model for involving consumers/citizens in finalising key documents for public release. The consumer/citizen input, including those with little
education or low socio-economic backgrounds, ensures that PHARMAC publications and reports may be read and understood by all New Zealand citizens, regardless of their background or situation in life. Other case studies highlighted areas or mechanisms which may not be so relevant for PHARMAC to adopt: Large scale events (for example, Case Study #7 Participatory Budgeting in Brazil, #5 CaliforniaSpeaks) can be highly expensive if replicated closely. However, many such
events can be undertaken on a smaller scale at much lower costs, and as such, should not be discounted automatically. Despite the large scale and expense associated with these
Case Studies, we encourage PHARMAC to consider the philosophy behind and reasons for adopting the mechanisms these Case Studies incorporated. Citizens Workshops adopting the CHAT tool (Case Study #11) could be useful in understanding consumer preferences, applied to PHARMAC funding decisions or assessing consumers’ willingness to pay for pharmaceuticals). However, the CHAT tool is quite
specific, and as we understand it, has been developed to explore consumer preferences for inclusion of particular health services in health insurance models (based on the United States model). However, the general principle of involving consumers in budget or priority setting has merit. Further information about recommendations for PHARMAC going forward are presented in Section 7.3 below.
7.2
What is missing?
This Review does not profess to be a complete review of all citizen engagement literature around the world. Emphasis in this Review was on practical examples of citizen engagement adopted in the health sector, and in other sectors where it was seen to be valuable and relevant. We were able to locate a large number of case studies, some more detailed than
others; however, only the 20 case studies we considered most interesting and relevant, and
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which
we
considered
would
best
illustrate
to
PHARMAC
an
appropriate
range
of
consumer/citizen engagement techniques, were included in this report. PHARMAC expressed a particular interest in understanding what similar entities were doing (for instance, National Institute for Health and Clinical Excellence [NICE] in the UK, TGA and Medicare/PBS in Australia) and how consumer/citizen participation has been used in informing development and use of QALYs. Although an extensive search was undertaken, there appears to be limited activity being undertaken in consumer/citizen engagement and participation by these bodies. In Australia, reference was found only to a project undertaken by Medicines
Australia to improve its relationships with consumer bodies (but not individual citizens themselves); this suggests PHARMAC’s commitment to consumer/citizen engagement is progressive in the field. NICE in the UK have undertaken some innovative work in this area; Case Study #10 sets out how the NICE Citizens Council works. Other participation mechanisms NICE has adopted include a ‘get involved’ section on the NICE website (www.nice.org.uk) , a formal patient, carer and public involvement strategy and the Patient Public Involvement Programme (including ‘how to’ guides for patient and carer organisations addressing how they can participate in NICE decision-making processes). References to how consumer/citizen engagement has been used in the development of QALYs were also not readily available. NICE set its Citizens Council the following topic for the Council to explore at their forum in July 2008: ‘Should NICE and its advisory bodies take into account the severity of a disease when making decisions? If yes, should the advisory committees: take severity “into consideration” alongside the cost and clinical effectiveness of evidence; or should severity be included in the calculation of the QALY?’ A detailed report is available at the NICE website73. The only other example of using consumer/citizen input into use and development of QALYs is Case Study #16, which used one-on-one depth interviews with breast and ovarian cancer patients to examine the effects of using the standard gamble versus time trade-off methodologies to calculate the QALY. Whilst this report has provided examples of engagement and participation with Māori, it has not undertaken a comprehensive review of this area. As noted in Chapter 6, the paper The
participation and engagement of Māori in decision-making processes and other government initiatives: A literature review prepared for the Electoral Commission (Full report)74 offers a
73
http://www.nice.org.uk/getinvolved/patientandpublicinvolvement/opportunitiestogetinvolved/citizenscouncil/reports/rep orts.jsp 74 Alliston, L. & Cossar, D. (2006). The participation and engagement of Maori in decision-making processes and other government initiatives: A literature review prepared for the Electoral Commission. Research New Zealand
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fairly comprehensive discussion of Māori engagement and participation in government decisionmaking that provides a useful guide. PHARMAC also expressed an interest in understanding e-participation techniques. We have
included some case studies in this report which adopt e-participation mechanisms (for example, Case Studies #1, #2, #6 and #20). However, there is a large and emerging body of literature in this field, which this current Review has been unable to explore in detail.
7.3
Recommendations for PHARMAC
We offer the following recommendations for PHARMAC to improve its consumer/citizen engagement and participation activities going forward: PHARMAC has undertaken much work to date in encouraging consumer/citizen engagement and participation in its decision-making (as highlighted in Section 2). In considering how to continue engaging consumers and citizens going forward, it is recommended, as a first step, that PHARMAC first examine its current engagement practices, and how these could be improved upon. Participation and engagement activities can be large or small. Whilst many of the Case
Studies included in this report are fairly large scale, they were chosen because of their innovative approaches. Whilst many of these examples may not necessarily be cost
effective, it is possible to adopt the philosophy of engagement that underpins them, or aspects of a Case Study, in a cost effective manner. Thus consideration can be given to
how elements of these Case Studies could be incorporated into PHARMAC’s current practices. Once PHARMAC is clearer on what it aims to achieve from consumer/citizen engagement, who it wants to engage with, and how it would like to engage with these
consumers/citizens, consideration could be given to working towards the development a consumer/citizen engagement strategy. In doing so, it is recommended that PHARMAC
consider the ‘axes of engagement’ and limitations of consumer/citizen engagement, as set out in Section 3.2 of this report. A consumer/citizen engagement strategy document does not need to be an extensive document, but one which sets out PHARMAC’s aims for practising consumer/citizen engagement within its policy context, and which will publicly display PHARMAC’s commitment and its desired approach to consumer/citizen engagement. Asking consumers/citizens how they would like to engage with PHARMAC (e.g. via a short survey) could inform the strategy and provide greater understanding of what
consumer/citizens’ interests are.
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The Consumer Advisory Committee has an important role in representing the views of the community to PHARMAC. New approaches to consumer/citizen engagement does not
necessarily aim to replace this, but rather complement the role of the CAC and help PHARMAC run its business and make its decisions in a more informed manner. Consideration could be given to working with the CAC, wherever this is practical, to enhance its engagement with the broader community, keeping in mind the distinct roles of each PHARMAC and the CAC. Continue to develop relationships with and learn from consumer/citizen engagement practices being undertaken by government and community sector agencies in New Zealand and more broadly. This Report provides PHARMAC with a useful start; however we would encourage PHARMAC to continue to monitor developing trends and additional examples as they continue to emerge. Consideration could be given to running internal training or
networking sessions summarising some of these findings, to ensure PHARMAC staff are familiar with and become advocates of consumer/citizen engagement. It is recommended that further work be undertaken to further examine and summarise information about Māori and Pacific Islander approaches to consumer/citizen engagement. This Review was not of sufficient size to comprehensively review this area. As we
understand it, whilst some literature and examples of Māori and Pacific engagement and participation are publicly available, it is likely to be through the development of personal relationships and networks with experts in Māori and Pacific Islander engagement and participation where the most valuable information will be attained. Draw upon existing knowledge and expertise. Many of the consumer/citizen engagement mechanisms addressed in this report require a level of understanding and expertise in applying the required tools and techniques. External organisations can offer a great deal of experience in this area, which will ensure optimal utilisation of the techniques. In turn,
many external organisations offer training programs in participation techniques, and as such, can work closely with PHARMAC to train your own staff to undertake and facilitate consumer/citizen engagement – this will enable PHARMAC to practise consumer/citizen engagement more independently. Consideration could be given to attending seminars and workshops run by expert organisations, such as those run by the International Association for Public Participation, to share knowledge with like-minded professionals from across public and private sectors. Incorporate evaluation into consumer/citizen engagement activities. This Review has
confirmed that whilst some evaluation of consumer/citizen engagement techniques is being undertaken around the world (largely by practitioners), there is not much work involving formal assessments of the effectiveness of particular techniques in the academic literature. Embedding evaluation the consumer/citizen engagement techniques PHARMAC adopts can
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assist
in determining
the
value
of particular techniques
to both PHARMAC and
consumers/citizens, in PHARMAC’s unique operating environment. For example, PHARMAC could include a discussion session or run an evaluation survey at the end of a forum about how people found the experience.
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A
APPENDIX A: GLOSSARY
CALD: Culturally and Linguistically Diverse. Citizens: Includes both service users and non-users. Generally, if people are invited to
contribute as citizens the intention is for them to leave behind their individual needs/desires and to help to identify the ‘common good’.
Citizen engagement: The OECD describes citizen engagement as the “mutual communication
and deliberation that occurs between government and citizens. It allows citizens and government to participate mutually in the formulation of policy and the provision of government services.”
75
Citizen’s jury: Usually take place over 2.5-5 days, during which participants (or ‘jurors’)
deliberate a certain question or issue. To help with their deliberations, they hear evidence from a variety of ‘specialist witnesses’, who present arguments on different sides of the debate. Jurors are given the time and space to scrutinise information given to them, and the experts, as they see fit, before reaching a conclusion.
Consensus conference: A consensus conference is a forum in which laypeople are educated
about a scientific discipline or issues, and create a consensus document reflecting their understanding and/or acceptance of the issue.
Consumers: A term that has emerged in the past 10-15 years within the public sector,
reflecting the desire for public services to learn from the private sector. The subtle semantic difference indicates a significant underlying change in mindset, whereby public services are expected to become more aware of their users needs and to tailor services accordingly (as
75 OECD (2001) ‘Engaging Citizens in policy-making: information, consultation and public participation’, PUMA policy brief No 10, July 2001, Organisation for Economic Co-operation and Development cited in Cavaye, Dr. J (2001) 'Community engagement framework project: scoping and review paper', Cavaye Community Development/CEO Committee on Land Resources, Queensland
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would be required in the private sector for a company to remain competitive). In this report, the term ‘consumer’ has been interpreted to mean the equivalent to that of a ‘service user’.
Deliberative event: Interactive workshops in which representatives of a community work
intensively with researchers and clients on an issue. This process often combines elements of qualitative research, quantitative research, brainstorming and problem-solving. It may involve large numbers of people from all walks of life, and a team of facilitators. The length of the workshops allows for a deeper and richer exploration of issues than would otherwise be possible with conventional focus groups.
Deliberative poll: Similar to a deliberative event, a deliberative poll involves members of the
community working intensively with researchers and clients on an issue. However, there is a greater emphasis on opinions before and after the event. “A deliberative poll is an enhanced opinion poll where a poll is usually conducted before deliberations and a vote or series of votes is taken afterwards (which may be compared to the original poll).”76
Dialogue session: A similar approach to a deliberative event or workshop. Differences appear
minor.
Focus group: Discussion groups usually with a maximum of 10 participants. Focus groups
typically last between 1.5 and 3 hours with a simple structure and are often used to help to understand how people think about an issue, service or product.
Interview: One-on-one research technique where a researcher poses questions to the
participant. motivations.
Allows for the in-depth understanding of an individual’s needs, experiences and
Online deliberative event: Replication of the face-to-face deliberative event (see definition
for Deliberative Event) in an online environment. It may involve the combination of research techniques including online quantitative tools such as surveys as well as online discussion groups. In the discussion component, up to 10 participants take part in an online discussion with a facilitator similar to an online chatroom. Questions and topics for discussion are raised by a facilitator and participants are asked to contribute to discussions on a regular basis. A number of multiple groups can be conducted simultaneously in an online deliberative event, which can last over several weeks allowing for well considered and deep exploration of issues and themes.
76
Carson, L & Gelber, K (2001) "Ideas for Community Consultation: A discussion on principles and procedures for making consultation work", cited from Victorian Local Government Association website http://www.vlgaconsultation.org.au/polling.shtml, Accessed 12 March 2009.
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Online forum: Mechanism where comments can be posted online for other participants to view
allowing them the opportunity to respond to the comments posted. Topics for discussion can be nominated by the forum ‘administrator’ or by participants themselves. Usually less structured and more free flowing than a facilitated online discussion or deliberation and without a set time limit.
Online panel (Online panel of citizens): A sample made up of members of the public who
are regularly and repeatedly surveyed or polled on issues or topics (in contrast to one-off online surveys). Citizens may sign up to become a member of panel or a panel can be created from an existing email contact list.
Service users/patients: Existing and past users of a service who will have a particular
perspective having seen ‘the system’ in action. Generally they are treated as ‘lay experts’ or experts in the patient experience. Patients refer to users of health services.
Wiki: Web page(s) with the specific purpose of allowing visitors to add new or edit existing
contributions. The result is a collaboratively created source of information. Most commonly known ‘wiki’ is www.wikipedia.org.
Workshop: Discussion group where the aim is for participants to brainstorm and/or problem-
solve.
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B
APPENDIX B: BIBLIOGRAPHY
Case studies
AmericaSpeaks
(2007) The Public Weighs in on Current Health Care Reform Proposals: highlight s of August 11, 2007 Statewide Conversation Available at: http://www.californiaspeaks.org/_data/n_0002/resources/live/C Afinalreport.pdf (2007) This is Democracy in Action – 2007 Program Report Available at: http://www.americaspeaks.org/_data/n_0001/resources/live/20 07_ProgramReport_AmericaSpeaks.pdf (2006) Towards a more caring city, available at: http://www.apcrc.nhs.uk/downloads/report.pdf Sourced on: 6 March 2009 (2007) When School’s Out: Conversations with Parents, Careers and Children about Out of School Services. Available from: http://www.familiescommission.govt.nz/publications/research.p hp Sourced on: 26 February 2009 (2002) ‘Mapping Public Participation in Policy Choices,’ Australian Journal of Public Administration, vol. 61, no. 1 (2007), CaliforniaSpeaks The Public Weighs in on Current Health Care Reform Proposals highlights of August 11, 2007 Statewide Conversation http://americaspeaks.org/document/docWindow.cfm?fuseaction =document.viewDocument&documentid=61&documentFormatI d=128 Sourced: 4 February 2009
AmericaSpeaks
Baldwin, Christina et. al.
Bellett, Donella & Dickson, Marny
Bishop, Patrick & Davis, Glyn CaliforniaSpeaks
CaliforniaSpeaks
Public Impacts: Evaluating the outcomes of the CaliforniaSpeaks Statewide conversation on health care reform, http://www.americaspeaks.org/_data/n_0002/resources/live/Ca Spks%20Evaluation%20Report.pdf Sourced: 4 February 2009
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Charlotte C. Sun et al.
(2000) Preferences Using Standard Gamble and Time Trade-off: Societal Versus Patient Perspectives. Academic Health Services Research Health Policy Meeting. http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102272167 .html Sourced on: 20 February 2009 (2001) Engaging the Poor in Policy-Making on Poverty and Social Exclusion in Flanders (Belgium). Available at: http://www.oecd.org/dataoecd/54/10/2537007.pdf Sourced on: 16 February 2009 (2001) Consumer Participation in Accreditation – Project report, available at: http://www.participateinhealth.org.au/Clearinghouse/Docs/cfca ccredreport.pdf Sourced on: 16 February 2009 (2004) ‘Primary Care Reform: Consumers Getting the Job Done’ Health Issues, no. 81 Available at: http://www.participateinhealth.org.au/clearinghouse/Docs/jaer macora81.pdf. Sourced on: 16 February 2009 (2007), Extensive changes recommended for out of school childcare services http://www.familiescommission.govt.nz/media/20070208.php Sourced on: 26 February 2009 Out of School Services background http://www.familiescommission.govt.nz/research/our_projects/ oss.php Sourced on: 26 February 2009 Families Commission: The couch case study http://wiki.participation.e.govt.nz/wiki/Families_Commission:_T he_Couch_Case_Study Sourced on: 26 February 2009 (2003). The changing role of the citizen in the e-governance & e-democracy equation, Commonwealth Centre for eGovernance. Available at: http://www.tanzaniagateway.org/docs/Changing_role_of_the_ci tizen_in_the_E-governance_E-democracy_equation_2003.pdf. Sourced on: 20 February 2009 (2008). ‘Citizen’s Juries in Planning Research Priorities: Process, Engagement and Outcome,’ Health Expectations, vol. 11
Claeyes, A.
Consumer Focus Collaboration
Emacora, J.
Families Commission
Families Commission
Families Commission
Gilbert Riley, C.
Gooberman-Hill, R., Horwood, J. & Calnan, M. Goold, Susan Door & Arbor, Ann Gramberger, Marc Gregory, Julie
(n.d.) http://www.changemakers.net/node/1459, Sourced on: 6 March 2009 (2001) Citizens As Partners, OECD Publishing (2007) ‘Conceptualising consumer engagement: a review of the literature,’ Australian Institute of Health Policy Studies. Available at: www.aihps.org.au Sourced on: 20 February 2009
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Harder + Company Community Research
(2008) An assessment of the impact of CaliforniaSpeaks on healthcare reform in California http://www.californiaspeaks.org/document/docWindow.cfm?fus eaction=document.viewDocument&documentid=144&document FormatId=217 Sourced on: 4 February 2009
Karantzas-Savva, E. & Kirwan, A.
King, A., & Duynhoven, H.,
(2004) ‘Ethnic community stakeholders as partners in primary and secondary diabetes prevention’, in Australian Journal of Primary Health, vol. 10 no. 3 (2007), Tougher penalties focus of road safety package, http://www.beehive.govt.nz/release/tougher+penalties+focus+ road+safety+package Sourced on: 5 March 2009
Maxwell, J. et al.
(2002) Report on Citizens’ Dialogue on the Future of Health Care in Canada. Available at: http://www.healthcoalition.ca/citizens'dialogue.pdf Sourced on: 5 March 2009 (2003) ‘Giving Citizens a Voice in Healthcare Policy in Canada,’ British Medical Journal, vol. 326 no. 7397 (2001) ‘Consensus Conferences On Genetically Modified Food In Norway’ in Citizens as Partners: Information, Consultation and Public Participation in Policy-making. OECD. Preliminary report on the road safety to 2010 engagement process: See you there… Safe as!, http://www.safeas.govt.nz/Executive-Summary-SafeAs-ReviewNov-2006.pdf Sourced on: 5 March 2009 (2000) ‘Confidence in Public Institutions: Faith, Culture or Performance?’ in Susan J. Pharr and Robert D. Putnam (Eds.), Disaffected Democracies, Princeton; Princeton University Press www.nice.org.uk, accessed on 2 March 2009 Families Commission online polling website: The Couch Available at: http://www.goodpracticeparticipate.govt.nz/levels-ofparticipation/one-off-consultation/couchcasestudy.html (2006) Making Consultation Real – A toolkit for health and social care Available at: http://www.wales.nhs.uk/sites3/docopen.cfm?orgid=420&ID=6 2562&6968C310-1143-E756-5C0B296EF88F7F07 Sourced 17 February 2009 (2008) e-Participatory budgeting: e-Democracy from theory to success? Switzerland: E-Democracy Centure, Universitat Zurich. Available at: edc.unige.ch/edcadmin/images/Tiago.pdf Sourced on: 3 February 2009.
Maxwell, J., Rosell, S. & Forest, P-G. Mørkrid, A.J.
National Road Safety Committee
Newton, Kenneth & Norris, Pippa
NICE website
Office for the Community and Voluntary Sector
OPM/Welsh Assembly Government
Peixoto, T.
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Pennington, John & Wright, Simon
(2008) The Challenge for the Bioethics Council and the Role of Public Participation, Available at: http://www.iap2.org/associations/4748/files/08CoreValues_Bio EthicsCouncil.pdf (2005) RCN Clinical Leadership Program - Transforming Clinical Leaders to become Agents of Positive Change: Executive Summary, Available at: http://www.rcn.org.uk/__data/assets/pdf_file/0009/78651/002 524.pdf Sourced 2 March 2009 (n.d) Assessment of Participatory Budgeting in Brazil. Harvard University: Center for Urban Development Studies. Available at: http://www.iadb.org/sds/doc/ParticipatoryBudget.pdf Sourced 3 March 2009 (2005) Healthcare Poll http://www.phil.cmu.edu/caae/dp/polls/oct05/index.html Sourced on: 17 February 2009.
RCN Institute
Serageldin, M, et al.
Southwestern Pennsylvania Program for Deliberative Democracy State Services Commission NZ
SafeAs! Roadsafety Stakeholder Engagement Case Study http://wiki.participation.e.govt.nz/wiki/SafeAs%21_Roadsafety_ Stakeholder_Engagement_Case_Study Sourced on: 3 February 2009
Toi te Taiao: The Bioethics Council
(2007) Who Gets Born? Pre-birth Testing Choicebook http://www.bioethics.org.nz/publications/pre-birth-testingchoicebook-oct07/pre-birth-testing-choicebook-oct07.pdf Sourced on: 25 February 2009 Online Deliberation Who gets born? Pre-birth testing 26 March 2008 http://www.bioethics.org.nz/publications/online-deliberationwho-gets-born-mar08/online-deliberation-who-gets-bornmar08.pdf Sourced on: 25 February 2009 Who Gets Born? A report on the cultural, ethical and spiritual aspects of pre-birth testing by Toi te Taiao: the Bioethics Council http://www.bioethics.org.nz/publications/who-gets-bornjun08/who-gets-born-jun08.pdf Sourced on: 24 February 2009
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The participation and engagement of Māori in decision-making processes and other government initiatives: A literature review prepared for the Electoral Commission. Research New Zealand (2008) Social Inclusion of the Hard to Reach: Community Consultation and the Hard to Reach – Local Government, Social Profiling and Civic Infrastructure. Final Report. Hawthorn, Victoria: Swinburne Institute for Social Research. Available at: www.sisr.net/cag/docs/HardtoReach_main.pdf Sourced 16 February 2009 (2005) Evaluating Public Participation in Policy Making. OECD Publishing. (2001) Ideas for Community Consultation: A discussion on principles and procedures for making consultation work, cited from Victorian Local Government Association website http://www.vlgaconsultation.org.au/polling.shtml, Sourced on: 12 March 2009. (2005) A Practical Guide to CALD Consumer Participation Downloaded from: http://www.ceh.org.au/downloads/CALD_Consumer_Participatio n.pdf on 26 May 2009 Personal communication, 11 June 2009. (2001) E- Governance to E-Democracy: Progress in Australia and New Zealand toward Information-Age Democracy, Commonwealth Centre for Electronic Governance. Available at: http://www.publicus.net/articles/aunzedem.html (2006) Engaging patients in their healthcare. Oxford: Picker Institute (2003) What Role for Citizens in Developing and Implementing Public Policy? Part 1. Available at http://www.curtainconsulting.net.au/download_controlled/Public%20policy/Curtain _CitizenEngagementPart1.pdf Sourced 13 December 2009 (2001) Citizens as Partners: OECD Handbook on Information, Consultation and Public Participation in Policy-Making. OECD Publications Service. (2005) People & Participation: How to put citizens at the heart of decision-making. Author: London. Can be downloaded from: http://www.nhscentreforinvolvement.nhs.uk/docs/P0012%20%20PeopleandParticipation_involve.pdf Sourced 4 March 2009 (2006). Ladders, stars and triangles: Old and new theory for the practice of public participation. International Journal of Market Research. 48(3) (2006) http://cpd.org.au/article/citizens-juries-please-say-
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(2001) Engaging Citizens in policy-making: information, consultation and public participation, PUMA policy brief No 10, July 2001, Organisation for Economic Co-operation and Development cited in Cavaye, Dr. J (2001) 'Community engagement framework project: scoping and review paper', Cavaye Community Development/CEO Committee on Land Resources, Queensland (2007) PHARMAC’s relationships presentation by Acting Chief Executive Matthew Brougham. http://www.moh.govt.nz/moh.nsf/indexmh/medicines-nz Terms of reference for the Consumer Advisory Committee (CAC), http://www.pharmac.co.nz/2002/04/18/CAC_TOR.pdf (2006) Clinical Leadership News. Spring Issue http://www.rcn.org.uk/__data/assets/pdf_file/0009/64953/clini cal_leadership_spring_2006.pdf Sourced 2 March 2009
PHARMAC
PHARMAC
Royal College of Nursing Institute
Vores Kommune
http://www.betasite.dk/vores%2Dkommuneuk/Default.asp?Sid eID=3&ID2=3
Websites
http://www.nice.org.uk/getinvolved/patientandpublicinvolvement/opportunitiestogetinvolved/ci tizenscouncil/reports/reports.jsp http://www.stats.govt.nz http://www.bioethics.org.nz/about-us/our-purpose.html http://www.goodpracticeparticipate.govt.nz/ http://www.thecouch.org.nz/member/faq#9
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Title
Abstract
Consumer/Citizen Engagement in Decision-Making FINAL REPORT Prepared for: PHARMAC Ipsos-Eureka project: 08-023585-01 Date: 30 June 2009 Contact: Elishia Harding Contributors: Elishia Harding Julie Young David Coulter Lucy Bourke Anna Pierce Fiona Collis Office address: Level 4, 493 St Kilda Road…
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