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

Minutes of the PHARMAC Consumer Advisory Committee (CAC) meeting Thursday 10 March 2011

The meeting was held at PHARMAC, 9th floor, Simpl House, 40 Mercer St, Wellington from 9.10 am. Present: Kate Russell Anne Fitisemanu Jennie Michel Barbara Greer Moana Papa Anna Mitchell Maurice Gianotti Shane Bradbrook Katerina Pihera Apologies: None In attendance: Bryce Wigodsky Jude Urlich PHARMAC (CAC Secretariat) PHARMAC (Management Team representative) Acting Chair Acting Deputy Chair CAC member CAC member CAC member CAC member CAC member CAC member CAC member

Matthew Brougham, Rachel Mackay, Davina Carpenter, Awhimai Reynolds and Fiona Rutherford (PHARMAC staff) attended for relevant items. _________________________________________________________________________ 1. Minutes of June 2010 meeting The Acting Chair reviewed the 7 September 2010 minutes and briefly discussed that meeting’s items. The Committee confirmed the minutes as true and accurate. Russell/Gianotti (carried) 2. Acting Chair’s Report “These first few months as Acting Chair have been somewhat fractionated due to Christmas, the cancelling of the December meeting due to unforeseen circumstances in my work and other’s commitments, and now the second Canterbury quake. However, I have been able to attend several Pharmac Board meetings and also a day long PTAC meeting – all of which were very illuminating to me and which have given me a clear picture of the workings of the Board and how they make their decisions. Naturally the Board is heavily led by the recommendations of the Pharmac Staff and as such, I do not observe them working in a strictly governance model such as the Carver model, as I feel, as an outsider looking in, they are very reliant on being given good quality information from staff on which to base their decisions and matters of policy and strategy are also necessarily heavily influenced by the staff. I do not see this as necessarily a negative thing (whilst if this was happening in a not for profit I would have cause for some concern). The nature of Pharmac’s work necessitates a high level

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of influence from staff to the Board and I do feel that appropriately probing questions are asked by the Board when needed. I noted in particular that a couple of Board members are not reticent about ‘slowing things down’ if they feel further clarification is needed and this is a great thing in a governance body. PTAC are truly an impressive bunch of people. Not only is their task a grueling and daunting one, but they do it with humanity and absolute integrity. I noted, during my day with them, several points at which the true impact on patients are noted for discussion and definitely taken into consideration. The task for us now is to settle down, gel as a group and decide how we want CAC to look for the next few years. We need to decide such things as: do we have enough consumer group engagement? Are we visible enough? Does the NFP sector KNOW what we do? Should we have a group coming to present their issues to us at every meeting? This type of consideration will help us to form a workplan that is meaningful and takes us simply beyond the reactive role CAC has had in the past. We should also be working toward our own presentation at the next Pharmac forum and I intend to push hard for that.” Russell/Gianotti (carried) 3. Matters arising 3A. Conflicts of Interest No interests relating specifically to items on the March meeting agenda were declared. 3B. Action points The Committee agreed upon the action points. Committee members noted a desire for opportunities to raise the CAC’s profile. The Committee discussed opportunities to gain insight and representation from cultures and ethnicities not currently explicitly represented at or within PHARMAC. Options included ensuring these groups’ attendance at the PHARMAC Forum or for CAC members obtain the insight of these groups for bringing to the Forum. Regarding this matter, the Acting Chair asked three questions for PHARMAC to respond to the Committee on: 1. Which “disenfranchised” communities can the CAC reach out to? Who can the CAC talk to from these communities? 2. Does PHARMAC support community fora involving CAC members prior to the PHARMAC Forum? 3. What does PHARMAC currently do to reach out to “disenfranchised” communities to ensure they are invited to the PHARMAC Forum and/or engaged in PHARMAC’s processes? A Committee member gave a feedback report of her attendance at the National Disability Conference in December 2010. “On behalf of The CAC I attended the National Disability Conference arranged by the Health & Disability Commissioner on the 6th December in Auckland. There was a great turnout & a series of speakers from government departments such as the Ministry of Health, Human Rights Commission,

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Ministry of Social Development & Ministry of Education & NGOs from the caregiving & disability sectors. The presentations included information about the services provided, complaint making & advocating for yourself & others. Unfortunately due to time constraints there was very little time for audience questions or comments but I did manage to talk to quite a few people individually about the CAC & found a lot of interest especially within the mental health community. I was also lucky to share a resource table where I could display the various information sheets [PHARMAC] sent me. By the end of the day nearly all were gone so my attendance at the conference was worthwhile.” 3C. PHARMAC Correspondence Report The Committee noted the Correspondence Report. The Committee commented that the tone of PHARMAC’s correspondence with consumers continues to be good. Members asked to continue receiving examples of correspondence. 4. Session with Chief Executive: New spending and hospital medicines purchasing PHARMAC’s Chief Executive discussed with the Committee the four major projects PHARMAC is currently undertaking: a review of the Exceptional Circumstances scheme, PHARMAC’s new role in hospital pharmaceuticals purchasing, PHARMAC’s new role in purchasing devices, and the current pharmacy service contracting. 5. Exceptional Circumstances review PHARMAC staff provided the Committee with a background to PHARMAC’s Exceptional Circumstances (EC) review and the specific issues PHARMAC is seeking the CAC’s feedback on. A Committee member recommended adding the community and Māori governance boards of each District Health Board (DHB) to the list of stakeholders to distribute documents to. The member noted these boards should also receive information from their respective DHB, as they can provide useful feedback and can further distribute consultation materials to those boards’ networks. One member considered that overall, the proposal is a big improvement on the previous scheme and the decision timeframes are quicker. The Committee provided answers to specific questions posed by PHARMAC: 1. What health circumstances is the Committee aware of where pharmaceutical treatment could be provided for that currently is not under the Pharmaceutical Schedule? The CAC had no further circumstances not already covered for under the Schedule, Exceptional Circumstances or the proposed changes to EC. 2. What is the Committee’s view on the potential for perceived inconsistencies in NPPA funding decisions? Does the Committee have any suggestions on how to minimise this perception? The Committee noted that some inconsistencies may need to be acceptable, particularly in the early stages of any changes, as the process is refined to allow more patients to receive funding.

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The Committee commented that it prefers wider access to exceptional circumstances funding where possible, and that some inconsistencies are an unavoidable necessity of widening access. 3. What suggestions does the Committee have for effectively communicating to consumers any changes to, and new process for, exceptional circumstances funding? The Committee stated that communications from PHARMAC to clinicians and patients about funding in exceptional circumstances is key to making any changes to EC sustainable. This includes providing patient-targeted resources that patients are able to take home with them from the hospital or clinic. Such resources could include a flow-chart depicting the process – this would give people an idea of what to expect if a clinician is making an application on their behalf. This may also assist the clinician as it would reinforce that PHARMAC is ultimately responsible for the funding decision, not the clinician themselves. The Committee suggested that, in addition to specialists apply for EC funding, PHARMAC keep clinicians and pharmacists well informed so they are better able to help patients understand their circumstances and provide consistent information. The Committee recommended PHARMAC also maintain communications directly with patients. 4. What other general comments does the Committee have regarding the proposed NPPA scheme? The Committee discussed and stressed the importance of allowing for a review process for declined exceptional circumstances applications. One committee member noted their view that there is a distinct separation between EC and high cost medicines. The member stated that discussions of changes to PHARMAC’s EC schemes do not need to include explicit discussions of high cost medicines. The Committee commented that sharing of information between health providers is important. For example, if an application is made by a specialist, a copy of this also needs to go the patient’s GP and the practice nurse. The Committee expressed concern that the system may result in some patients not being granted access to a medication previously available through EC as it could now be accepted for Schedule funding assessment (under which circumstances it could not be accepted under the proposed NPPA). As the funding review process can take months and in some cases, years, this could result in some patients being denied important treatment. 6. Records retention consultation update The Committee was given a brief update on PHARMAC’s current Records Retention Consultation, about which the Committee provided feedback at its previous meeting. 7. Māori Responsiveness Strategy: Te Whaioranga review planning PHARMAC staff provided the Committee with a brief background to, and proposed process for, the recently initiated review of PHARMAC’s Te Whaioranga Māori Health Action Plan. PHARMAC staff asked for the Committee’s advice on who to engage with on this review, and how best to engage with them.

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Members advised of their willingness to assist PHARMAC in distributing documents related to the review to increase engagement and feedback. Committee members suggested PHARMAC contact the iwi governance boards and the community boards of DHBs. Members suggested this would be a useful approach to not only receive feedback, but to also further disseminate any questions and resources related to the review. Members advised these groups may be best contacted via DHBNZ and the Boards of each DHB. Members also suggested PHARMAC contact Māori student bodies and groups, particularly those involved with Māori health, such as the Māori Students Nursing Association. Members also noted that tapping into the Māori scholarship database and contacting Māori health providers would be useful. One member discussed the usefulness of contacting the National Māori Nursing and Midwifery Programme operated by the Auckland District Health Board. Committee members discussed the best approach PHARMAC can take for receiving feedback, including via attaching a list of questions to an emailed discussion document, including feedback sessions on this topic in the PHARMAC Forum and any pre-fora held around the country. 8. Hospital pharmaceuticals purchasing This item was postponed to a future Committee meeting due to time constraints and because the Chief Executive had briefly discussed this matter earlier 9. Pharmacy contracting and Schedule rules consultation PHARMAC staff provided a background to PHARMAC’s current consultation on pharmacy contracting and Pharmaceutical Schedule rules. A committee member pointed out an issue that can create patient confusion due to multiple dispensings. The member discussed how it was possible for patients to have their prescriptions filled at both their regular pharmacist and an emergency pharmacist because of the lack of communication between them. Committee members queried whether it was possible for the outcome of the consultation to take into account and encourage better communication between pharmacists and patients. Members suggested addressing through the consultation the issue of general practitioners signing prescriptions for patients in residential care without a thorough evaluation. Members also queried whether any work could be done to better integrate the different prescribing and records management software used by health clinics and pharmacists. PHARMAC staff replied that work is currently under way by the National Health Information Technology Board (under the direction of the Ministry of Health) on this topic.

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10. Committee discussion The Committee discussed possibilities for future work for the CAC, including consumer engagement opportunities and the PHARMAC Forum. The CAC noted that resources were the key means of communicating with consumers. The Committee nominated Kate Russell as Chair of the CAC. Fitisemanu/Gianotti (carried) The Committee nominated Anne Fitisemanu as Deputy Chair of the CAC. Michel/Russell (carried) Noting papers Noted: Access and Optimal Use update Summary of new investments

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