This is the text extract for November 2011 Consumer Advisory Committee minutes, browse documents here.

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Minutes of the PHARMAC Consumer Advisory Committee (CAC) meeting Thursday 17 November 2011

The meeting was held at PHARMAC, 9th floor, 40 Mercer St, Wellington from 10.00 am. Present: Kate Russell Anne Fitisemanu Anna Mitchell Maurice Gianotti Shane Bradbrook Katerina Pihera Moana Papa Apologies: Jennie Michel (CAC member) Barbara Greer (CAC member) In attendance: Bryce Wigodsky Jude Urlich PHARMAC (CAC Secretariat) PHARMAC (Management Team representative) Chair Deputy Chair CAC member CAC member CAC member CAC member CAC member

Steffan Crausaz, Simon England, Jessica Dougherty, Janet Mackay, Christine Chapman (PHARMAC staff), and Stewart Jessamine (Medsafe) attended for relevant items. _________________________________________________________________________ 1. Minutes of July 2011 meeting The Chair reviewed the 8 July 2011 minutes. The Committee confirmed the minutes as true and accurate. Russell/Gianotti (carried) 2. Chair’s Report It is pleasing to note that various CAC members have now begun to attend Board meetings when I am unavailable. I believe that sitting in on a Board meeting is a necessary part of CAC orientation and encourage more of you to do so when the opportunity presents itself. The Board meetings I have attended since the date of our last meeting have continued to be interesting to attend, with medications on the agenda that have had considerable consumer group lobbying attached to the decision-making processes. The forums held around the country were a great exercise and in some centres there was a very pleasing turnout. In Canterbury, there was a lot of conversation around communication of key messages from Pharmac and how these might be best delivered. In the main, people came with a broad agenda but the inevitable ‘one-issue crusaders’ did still rear their heads. I noted the presence at the Christchurch one of a ‘seasoned campaigner’ who is notorious in NGO circles in Canterbury, for turning up at forums of this kind and wanting to talk ad nauseum about his personal issues.

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Overall, it appears that the feedback has been very positive and certainly the attendees at the Christchurch event commented that they appreciated that Pharmac had taken the time to put the forums on. The Hokitika forum was cancelled due to a lack of RSVPs. Sadly there was a miscommunication between Barbara and Pharmac staff as she did know of several people wanting to attend but due to illness had not been able to let them know. I have not received any feedback from community groups wanting further contact with CAC following the letter sent out with the forum notice. I am wondering if the offer of a short article on the functions of CAC, for NGO newsletters and magazines might be a good way to get us more exposure. I am happy to write something around 300 words long and will suggest to Pharmac that they send it out for us. Report of activities PHARMAC BOARD MEETING HELD ON SEPTEMBER 30 TH 2011 This meeting was held in Auckland at the invitation of Auckland District Health Board. I attended this meeting on behalf of CAC Committee Chair and Deputy Chair who were unable to attend that day. It was interesting and I enjoyed the opportunity to see how the Board worked and to meet those Board members who were present. The only Agenda item I felt CAC should be appraised of related to the ongoing Sunday Star-Times coverage of the introduction of Dabigatran (Pradaxa) and possible adverse reactions to the drug in some clients. I was also given the opportunity to read all the briefing papers for the Board meeting and was impressed at the amount of work PHARMAC staff and its Board members do and the quality of this work. Thank you again for this opportunity. Jennie Michel (in absentia) 3. Matters arising 3A. Interests register No interests relating specifically to items on the November meeting agenda were declared. 3B. Action points The Committee reviewed and agreed upon the action points. The Committee undertook to begin work with PHARMAC staff on developing a “resource bucket” of readily available information to provide to consumers and other interested parties. In relation to Action Point 11 (regarding CAC involvement with other health sector consumer advisory groups) the Chair noted a programme currently undertaken by the Health Quality and Safety Commission on patient-centered care that the CAC may wish to learn more about. The Committee discussed inviting the Minister for Whānau Ora to speak to members about Whānau Ora.

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3C. Correspondence The Committee noted the PHARMAC Correspondence Report. The Committee discussed the relationship between consumer groups and pharmaceutical companies and noted examples of where this relationship can become inappropriate. One member stated that, in circumstances where consumer groups partner with pharmaceutical companies to conduct research or generate knowledge, this may be appropriate where the consumer group does not have the funds to conduct the research themselves. The member noted that if there is research to be done, and it is good quality research, it does not matter who funds it. The Committee noted PHARMAC’s response to consumer concerns about the sumatriptan brand change. Members expressed some dissatisfaction with PHARMAC’s response to concerns that the new funded brand’s injection device is big, flimsy and awkward. Noting the savings achieved from the brand switch, members stated that in this case more consideration was needed for the delivery mechanism and its impact on patients. In some cases, such as sumatriptan to treat migraines, the speed and easy access of treatments is important. The Committee reminded PHARMAC to ensure that concerns such as this are also notified to the product’s supplier, although the Committee acknowledged that to a certain extent the tension was as a result of a brand change rather than an inherent issue with the device which had been in use for some time with other medicines without these concerns being expressed. The Committee noted an article provided to PHARMAC by a clinician discussing access to treatments for sleep apnoea, and which included some criticism of the CAC. Members discussed the issues involved and agreed to provide a response to the author. 3D. Grapevine The Committee discussed outstanding Grapevine issues, particularly the packaging and information provided with pharmacist-packed medicine blister packs. One member asked if there was a national standard for blister packaging. The Committee requested PHARMAC provide information relating to its Grapevine items. 4. Session with Acting Chief Executive PHARMAC’s Acting Chief Executive spoke with the Committee and thanked members for their assistance with the recent PHARMAC Regional Forums. The Acting CE and Committee members discussed some possible actions for PHARMAC as a result of feedback from the Regional Forums. The Acting CE briefed members on upcoming changes to the listed asthma products. The Acting CE briefed members on issues around the funding of dabigatran (Pradaxa). He noted some media interest related to reported deaths possibly related to dabigatran and that PHARMAC has made available on its website the information it took into account when deciding to fund dabigatran. He stated that one of PHARMAC’s concerns is that unbalanced reporting of the issue may result in further problems if patients change their medication regime without consulting their doctor after reading/hearing a news item. The Acting CE noted that PHARMAC is refreshing its Vision, Mission, Values and Core Competency in light of recent changes to PHARMAC and its role. He stated the focus is on clinical engagement and increasing capability in relevant areas. A Committee member queried what role the Treaty of Waitangi and Whānau Ora would play in PHARMAC’s updated identity statements. The Acting CE

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responded that these are generally considered in most of PHARMAC’s processes and including reference to them in the identity statements will be considered. The Acting CE briefed the Committee on PHARMAC’s involvement in the pharmacy contract negotiations. He noted recent changes implemented by PHARMAC regarding Close Control prescribing and dispensing. The Acting CE briefly discussed the new investments in medicines made in 2011/12 and the estimates of patient numbers likely to benefit. 5. Presentation on the role of Medsafe A senior manager from Medsafe presented to the Committee on Medsafe’s role in the health sector. The Committee and the presenter discussed issues such as:          New Zealand’s place in the global pharmaceuticals market the responsibilities around medicines labeling and packaging the regulation of medicines and standards of quality medicines prescribing factors considered by Medsafe when assessing a medicine for approval clinical development and trials of medicines Medsafe not being involved in regulating rongoā/traditional medicines the assessment of generic medicines and bioequivalence adverse reactions to medicines and the Centre for Adverse Reactions Monitoring (CARM).

Regarding assessment and bioequivalence of generic medicines, the presenter explained the requirements and process of demonstrating a generic medicine’s quality, safety and efficacy. He stated that bioequivalence of a generic medicine to a brand name medicine means they have the same effect, clarifying this was different from having a similar effect. However, he noted that this applied to patient populations on average and individual patients may experience some differences. A Committee member asked about product labeling for blister packs and its consistency, clarity and readability, and if there was a means to standardise this in New Zealand. The presenter noted he would follow up with the Committee on this matter. 6. Committee discussion: Report-back on Regional Forums The Committee discussed the key messages arising from each Regional Forum, which members helped PHARMAC to conduct. Otahuhu, Auckland      Some participants expressed concerns about the amount of notice given by PHARMAC for the Regional Forum. Attendees stated the Regional Forum was a good opportunity to begin learning more about PHARMAC and the CAC. Attendees were interested in knowing where PHARMAC intends to go from here and how attendees can continue being involved. Participants reminded PHARMAC Pacific peoples are individual nationality groups (e.g. Samoan, Tongan, etc). Participants suggested PHARMAC have forums similar to the Regional Forums that are Pacificand other ethnicity-specific.

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Attendees are keen for feedback from PHARMAC and for more engagement opportunities such as this.

Rotorua   Participants were thankful for clarification about the role of PHARMAC. Some attendees suggested that PHARMAC examine the regional differences in health issues and make decisions targeted more specifically to a particular region’s needs. Attendees expressed concerns about poverty issues affecting access to medicines, in particular concerns about the co-payments required. PHARMAC staff noted that this comment was unique to this Regional Forum session. There was good attendance from a broad range of groups, and PHARMAC staff showed commitment to the local kaupapa. Participants are keen for more engagement opportunities such as this.

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Christchurch      Attendees appreciated the opportunity to learn more about PHARMAC. Participants suggested the best way to communicate with patients was through their pharmacists as these are the key health professionals in the community regarding medicines. Attendees discussed the PHARMAC website and that it was busy and wordy, but understood that to a certain degree this was necessary. Attendees expressed much interest in learning about the Centre for Adverse Reactions Monitoring (CARM). A Committee member suggested that for future Regional Forums it be notified in the advertisement what the purpose of the Regional Forum is and there be a disclaimer that it is not a platform for consumers to discuss their specific issues regarding health care or PHARMAC.

Taupo    Attendees noted the good organisation and professionalism of PHARMAC in holding this Regional Forum. Attendees also appreciated the attendance of senior PHARMAC staff and Directors. Participants noted that patients waiting in pharmacies and doctors’ waiting rooms are “captured audiences” and this is a prime place to inform them about PHARMAC and/or a PHARMAC campaign. This could include both printed resources and HealthTV commercials. Participants appreciated clarification about the roles of PHARMAC and Medsafe. The Committee discussed the possibility of including Medsafe and other key health sector groups to partner in these Regional Forums. The Committee suggested that if this occurs, Medsafe can also utilise the CAC to reach into communities. Participants expressed interest in more engagement opportunities such as this. Attendees were interested in learning about CARM.

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North Shore, Auckland

I admit to being somewhat nervous about this event but happily all my nerves dissipated on the day! We had about 20 attendees mostly representing an organization or group. The presentations by PHARMAC staff were well received and there were interesting questions from the floor. The general feeling of the participants seemed to reflect positively on this opportunity to interact directly with PHARMAC staff and to find out more about the Consumer Advisory Committee.

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We had expected a participant who had written to PHARMAC prior to the day but he did not attend. His letter was critical of CAC but the feeling from PHARMAC staff was that he was confusing CAC with PTAC. He was a Doctor and he represented Sleep Apnoea NZ.

(summary provided in absentia) Porirua       It was noted that the introductory session on PHARMAC was very interactive and viewed by participants as a conversation. Attendees appreciated clarity about the roles of PHARMAC and Medsafe. Participants expressed interest in more engagement opportunities such as this. Attendees discussed the need to bring traditional healers and modern medicine professionals together to provide holistic health care and break down barriers. Attendees gave positive feedback that PHARMAC has a Māori Responsiveness Strategy and a Pacific Responsiveness Strategy. A Committee member suggested, in future, providing tangible demonstrations for participants when discussing issues, i.e. kits, items for passing around, etc.

The Committee noted that two of the most common themes arising from all Regional Forums were that consumers want more opportunity for engagement with PHARMAC and that it was beneficial to clarify misconceptions about PHARMAC. Members also agreed that events such as the Regional Forums could be a part of the Committee’s regular role with PHARMAC. The Committee discussed some matters arising from Regional Forum discussions regarding PHARMAC’s website. Members suggested having downloadable PDFs and information able to be copied and pasted for re-use by others would be beneficial. Members also noted that providing resources for those who work with patients was just as important as providing resources for patients themselves. One member cautioned PHARMAC not to simply link to websites of other more relevant agencies as these can be out of date or not user-friendly or not take the person directly to the right page. She suggested working with these other agencies help them improve their website and provide more useful, relevant information to consumers. 7. Planning for the February PHARMAC Forum PHARMAC staff discussed previous PHARMAC Forums with the Committee and its preliminary thoughts on the 2012 Forum. PHARMAC staff and Committee members discussed the best role for the Committee in the Forum. Committee members discussed that its role could be to advise the audience of the direction the CAC is going with regards to consumer engagement and to obtain feedback from Forum attendees on how they connect with communities. The Committee agreed that Forum attendees should be made aware of CAC members being present at the Forum, perhaps inviting them to stand during the introductory phase of the day. Other options discussed included an introduction to the CAC to Forum attendees, holding a small group workshop session to discuss health consumer issues, CAC members being seated amongst other attendees to contribute to table discussions and using a panel presentation format. It was discussed whether the CAC should be the topic of a workshop session, members share with Forum attendees the feedback received from Regional Forums, or the CAC advising PHARMAC on agenda items for discussion.

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Committee members discussed various options for sharing the themes and feedback from the Regional Forums with Forum attendees. The Committee agreed that it had a responsibility to share feedback from the regional events with people at the national Forum, and that a `workshop’-type presentation in a breakout session (not a fully plenary session with table discussion) would be appropriate for this. Forum attendees should also be given an outline of the role of CAC. The summary of feedback from the Regional Forums provided a good guide for developing a presentation. Based on feedback from Regional Forums, key discussions for the main Forum could include the role of the pharmacist in health care and addressing health disparities and inequalities. Members agreed to reschedule their February 2012 meeting to realign with preparations for the Forum. 8. Committee discussion: developing a new Committee name Item deferred to a future meeting. Late agenda item: Asthma changes implementation PHARMAC staff discussed with the Committee the best way to implement and notify of possible upcoming changes to the subsidy of asthma products. One member stated that providing resources in doctors’ offices and pharmacies’ waiting rooms and an advertisement on HealthTV would be beneficial as this is where patients are a “captured audience”. Another member suggested working with pharmacy software vendors to add alerts to prescribing software to remind clinicians and pharmacists to discuss the changes with patients when prescribing the relevant medicine. One member stated that some consumers may need more attention than others when discussing the changes. She suggested PHARMAC could use its data to target certain markets more when notifying of the changes. Members suggested PHARMAC place advertisements and notices in relevant consumer groups’ magazines and websites. One member suggested PHARMAC create commercials for radio, particularly on Pacific radio stations in relation to targeting Pacific health consumers. One member noted that because of the complexity of the changes, discussions with patients may be best done on a one-to-one basis between the patient and their doctor or pharmacist. It was agreed that providing information directly to health professionals would help them discuss the changes and issues with their patients on an individual basis. Noting papers Noted: Access and Optimal Use update Summary of new investments Update on dabigatran (Pradaxa) Update on hospital pharmaceuticals project Update on PHARMAC’s Pacific Responsiveness Strategy

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