Summary of feedback on PHARMAC’s draft Pacific Responsiveness Strategy

As part of this consultation, PHARMAC undertook a series of community fono around New Zealand, and also invited feedback via written submission.

PHARMAC would like to thank everyone who has taken the time to attend a community fono or provide us with feedback through written submission.

We welcome any feedback on the summary and the process that we have undertaken to seek feedback.

Summary of feedback - Pacific Responsiveness Strategy consultation July-August 2016

Background

In late 2015 PHARMAC commenced the re-development of our Pacific Responsiveness Strategy.  In June 2016 we published our draft strategy on the PHARMAC website and invited public feedback on the draft. We also signalled we would undertake a series of fono around the country to give the Pacific community an opportunity to discuss the challenges and opportunities facing Pacific people in relation to medicines, and also gather their thoughts and feedback on the proposed strategy.

Community fono

PHARMAC’s journey started at the end of June 2016 in Auckland and continued on to Hamilton, Whangarei, Dunedin, Christchurch, Wellington and Hawke’s Bay over a period of four weeks.  We completed a series of 11 fono around the country attended by close to 90 people. Attendees represented all Pacific cultures and were a range of ages. Attendees were often part of the health workforce but all were representing their Pacific communities.

The community fono sessions provided an introduction to PHARMAC - what we do, how we make decisions, why we do the work we do - and invited questions and comments on the PHARMAC model. We then presented our draft strategy and invited feedback on whether the Strategy would enable PHARMAC to best meet the needs of Pacific communities.

Community fono sessions were facilitated by PHARMAC’s Consumer Advisory Committee (CAC) Chair, David Lui with the assistance of other CAC members Tuiloma Lina Samu and Key Frost. PHARMAC staff, including members of the Senior Leadership Team, was also present at all of the fono.

Written submissions

Most feedback on the strategy came through our community fono.  Additionally, 10 written submissions were received from Health Professionals, Professional Associations, DHBs, non-Government organisations (NGOs) and an international agency.

Summary of feedback

The consultation has given PHARMAC a far greater understanding and appreciation of the challenges and opportunities facing Pacific communities in relation to access and use of medicines, and also more generally in achieving the best health outcomes. The diversity of feedback reflects the diversity of needs amongst the Pacific population in New Zealand, and the very real differences amongst Pacific cultures, geographical areas, and generational differences.

There were some clear themes that emerged throughout the consultation, and the feedback is presented within these themes below. The italicised text reflects direct quotes that we have captured throughout the consultation period.

This summary captures what we heard during the consultation, it is not intended to present a PHARMAC view nor does it indicate how we may go about addressing some of the challenges, issues and potential opportunities presented.  The next stage of development will be to incorporate what we can into our final strategy and the accompanying action plan.

The Pacific person – spirituality, values and world view

“The waka needs two paddles (medicines and God) to go anywhere, not just one.”

• The importance of religion and spirituality was a consistent theme we heard across the fono. Several examples were shared where aiga have decided to use prayer rather than medicines, or placed health in God’s care rather than through medicines. Many fono attendees reinforced the importance of acknowledging spirituality and religion within PHARMAC’s strategy. This view was not held by all, with one attendee at a fono being firmly against Christianity and religion and the influence this can have within the Pacific community. 
• Churches are the centre of Pacific communities. Using the church and Ministers as an effective and influential communication channel to Pacific communities was encouraged by many fono attendees.
• A number of fono attendees reflected on the importance of traditional medicines, particularly first-generation Pacific people in New Zealand. The message we heard was the need for PHARMAC to respect Pacific values and beliefs and consider how western medicine can be used alongside traditional medicines.

“We are becoming an increasingly drug dependant country - it’s not like this in the islands though. We have to adapt our people to drug reliance through educating them on the shift and how we deal with that and what we need to do.”

Relationships between the health professional and Pacific peoples

• We heard that Pacific peoples generally place high trust in health professionals, but often do not ask questions or feel comfortable asking for more explanation. This often results in a lack of understanding of the medication being prescribed. Several attendees challenged PHARMAC to consider how we can empower Pacific peoples to ask questions. A written submitter also noted that the ‘enabling growth’ stage of the draft strategy will only happen by empowering communities.

• The important role of pharmacists was a focus of the discussion at a number of fono. Attendees shared stories of the value of having a pharmacist who was able to explain the purpose of medication as well as instructions for use. Conversely, others shared stories of not feeling comfortable in pharmacies, in relation to sharing their information or feeling able to ask questions. There was a general feeling that pharmacy could be very influential in helping Pacific people improve their health literacy.

“Make your pharmacist culturally aware. Find a good one” – Pacific pharmacist in attendance at fono

• A number of system-level challenges were raised as issues that prevented aiga understanding their medicine and health care. This included the inability for famili to attend appointments due to appointments being scheduled during work hours; the inability to easily follow-up with GPs if more information was needed; and that a 15 minute interaction with a doctor was often not enough time, particularly if there was a language barrier.
• Some attendees acknowledged the frustration that there is a lack of communication between GPs and pharmacies and often mixed messages as to instructions for the use of medicines etc. This added to the confusion about medicine management. Relatedly, a written submission provided an example of an Australian model where a relationship between pharmacist and doctor to review medicine use on a regular basis was effective in improving medicines management for high users of medicines (eg chronic illness).

Understanding medicines – including risks and benefits

“Medicines are thrown out because ‘I’m not getting better’ or ‘I am better so I don’t need them’”

• It was clear that there is a desire across the Pacific communities to have a greater understanding of the key parts of the medicines system.  A number of community fono attendees expressed their gratitude in understanding the role PHARMAC plays within the health system and noted that this information would benefit and empower their communities.

• A theme across all fono was that medicines are not prescribed, labelled or explained in a way that makes sense for many Pacific peoples. Several suggestions were made to help improve this situation including:
  • health medication education in schools
  • pharmacists being able to visit family homes (similar to the Plunket model)
  • educating community leaders to educate the community
  • higher quality information to meet the needs of different Pacific audiences
  • better support for education programmes that draw on, for example tipuna health
  • money could be better spent in educating our āiga rather than funding new medications
  • the labelling of medicine needs to be clear and only include essential information (for example; what medicine is for, how often it needs to be taken).
• Another common concern raised by Pacific peoples at several fono was the lack of understanding of medicine side-effects. Receiving more information on what side-effects may occur, what they mean, and how they should be treated/reported/addressed was something that would help Pacific communities.
• Relatedly, it is unclear to the community, who is responsible for providing information on adverse events and side-effects – is this the GP, the pharmacist or someone else?
• Sharing medication was noted as being very common amongst famili groups, and there is lack of understanding concerning the risks with taking medication not prescribed for that individual. Sometimes whanau will take a child to the doctor with a sore knee so they can give the free medication to someone else and, in turn, end up taking the wrong medication. A written submitter also shared experiences of aiga getting confused about the multiple names of some medicines where in fact it was the same treatment.
• Better and clearer instructions are needed. A number of attendees talked about the importance of helping Pacific aiga understand why they need to take the medicine, not just the instructions for how to take them. This was a view also reflected in a couple of the written submissions.

“If we can’t eat grapefruit with medicine Pacific people need to know what is a grapefruit, what does it look like, what will happen if I mix it with my medication?”

• Pacific people don’t know what medicines are available and therefore are not empowered to challenge a health professional about other options or ask the right questions.

• Polypharmacy was an issue discussed at a number of fono. A number of people noted that poorer health outcomes meant that Pacific people often needed to be on multiple medications but there was an issue with understanding what all the medications are for and which are most important.

• Word-of-mouth and previous experiences with the health system was noted as influencing the behaviour of Pacific peoples with medicines.   An experience was shared where a GP prescribed the wrong medication which affected the patient’s kidneys. This poor experience translated to a hesitancy to take any more medication.

Communicating with Pacific communities

• The importance of having a comprehensive and targeted communications plan or strategy was recommended at a couple of fono and by a written submitter. The submitter noted that we cannot assume ‘sameness’ when it comes to targeting communications to Pacific communities. A communications strategy that is multi-pronged and that covers focal points rather than specific outputs of activity.
• Pacific people often have an attitude of “I feel well so I am well.” PHARMAC needs to understand this in our communications targeting Pacific as this attitude impacts on the use of medicines (eg, no need to pick-up repeat prescription if feeling better).
• Language barriers were a consistent theme in relation to barriers for Pacific accessing the healthcare system. Pacific people are often reliant on family or community to translate and it was noted that not everyone is lucky enough to have that support. Therefore health care professionals need to assist people’s understanding. Elderly Pacific people were noted to be a group that is particularly vulnerable as a result of language barriers.
• A number of attendees at different fono noted that community-based education is best received when delivered by Pacific people. Building partnerships and relationships with those who can deliver the message that PHARMAC wants to send will be important. This view was also reflected in a number of the written submissions.
• A couple of attendees at different fono asked how Pacific people were meant to find out about the new pharmaceutical treatments that will particularly affect Pacific peoples, for example the new hepatitis C treatments. Targeted communication is essential as the ‘standard channels’ for communication will likely not reach Pacific communities. The radio was noted to be a key communication channel for Pacific people. Glossy pamphlets are not enough unless appropriately targeted to a specific audience. Verbal or visual communication was agreed across a number of fono as the most effective method of communication.
• A portal of reliable information was noted as a means by which Pacific people could be empowered to build better understanding. Famili will often search the internet for information and the younger generation also seek out information in this way. A number of people commented at fono and in their written submissions on the need to target the young given the Pacific population in New Zealand is comparatively young.

“Need to be aware when communicating or going out to the community that there are two groups - New Zealand born versus non-New Zealand born. The level of language and understanding is different.”

• Implementation of changes to medication or new medication where Pacific people are targeted should be tested with Pacific people first. An example was given where limited explanation of a vaccination programme meant low-uptake by Pacific people as what the vaccination was for had been misinterpreted. Testing with the Pacific workforce or community in the first instance was an idea suggested to help ensure communications are appropriate.

Financial barriers

• A key barrier to accessing medicines (and healthcare more generally) noted across all fono and most written submissions was cost and the ability to pay. A number of Pacific people said cost is the biggest barrier to people collecting their medicines. One attendee noted that people will often save to go to the doctor, but collecting a prescription was often delayed because it could not be afforded at the same time.
• The $5 prescription co-payment was clearly a barrier to Pacific peoples collecting their medicines from the pharmacy. Representatives from NGOs and other community groups shared stories of where others had stepped in to pay for outstanding prescriptions. It was also apparent that the rules around co-payment, and particularly repeat prescriptions were not well understood. Different experiences were shared about the consistency of how the co-payment is applied by pharmacies
• A significant number of attendees at the fono were unaware that the prescription subsidy card existed, and many thought their community was largely unaware of this subsidy. Suggestions were made about the subsidy being managed on behalf of patients so it was not the patient’s responsibility to keep track of prescription charges.
• A couple of attendees at different fono noted that cost may be a barrier in some instances for Pacific peoples due to paying for other methods of treatment than pharmaceuticals, for example health shakes. The issue being that they are ill-informed or deceived by marketing rather than listening to the advice or information from credible sources.
• Knowing the real cost of medicines (beyond the $5 prescription co-payment) was noted by some as a potential incentive for some people to adhere to their medicines. This was also noted in a written submission.
• A written submission provided an example of where some medical practices use their ‘service to improve access’ funding to enable prescriptions to be billed back to the practice. It was suggested that PHARMAC could consider how this model of funding could be encouraged or used more widely.

PHARMAC’s relationship with Pacific communities

• A number of attendees at fono felt they now had a greater understanding of PHARMAC, as previously they just knew PHARMAC from media coverage. It was noted by many that more ‘introduction to PHARMAC’ sessions in the community would be valuable to improve Pacific peoples’ understanding of medicines. Similarly, a written submitter suggested a PHARMAC knowledge building campaign would be useful in conjunction with a campaign encouraging families to comply with their medicines.
• There were a number of suggestions about the need for PHARMAC to have advocates in the community to work with famili and to promote PHARMAC’s messages. Other healthcare professionals such as social workers were noted as influential within Pacific communities.
• PHARMAC has a lot of data but Pacific communities felt that we need to work with the community to understand the context and better understand the reasons why we are seeing the trends we are seeing. Relatedly, a written submitter noted the need for more analysis that focused on different Pacific groups, acknowledging the differences that exist.

“Creating negative statistics about Pacific Island people isn’t helpful; we need to use the data to help make people healthier.”

• It was suggested at a number of fono that PHARMAC should makes its data more readily available to understand if interventions, such as house insulation, are effective in making families more healthy, through reduced medicine use and hospital visits.
• Communities want to know information such as “How many Pacific people are currently going without PHARMAC funded medicines?” to help address this problem.
• Frustration was expressed in a number of fono about the funding and resourcing for community groups and NGOs who are running effective programmes but are reliant on funding that is not consistent or ongoing. One attendee noted that previous experiences of Government agencies attending community events with big tents and glossy pamphlets does not rest well with organisations at the coal-face who are making a difference with very little funding.

“We know about the bad stats our Pacific people have but our funding is the first to get cut, our problems are great but we are expected to fix it with less than everyone else."

• It was reflected through a number of fono that PHARMAC needs Pacific representation within PHARMAC (including advisory committees) to enable Pacific cultural awareness. Also, if PHARMAC wants to be present in the community, the community needs to be clear what that role was for PHARMAC in the community. For example, can community talk to PHARMAC when they have an issue? Should PHARMAC be working with doctors / pharmacists to ensure they can meet the needs of Pacific at the time of interaction?

Specific feedback on PHARMAC’s draft Pacific Responsiveness Strategy and the consultation that was held

• There was strong support for the visual representation of PHARMAC’s strategy in a culturally meaningful way. There were differences in views across different fono about the use of the hibiscus flower. The narrative behind the analogy was supported; however some attendees thought an image that was more representative of all Pacific cultures could be more appropriate. The coconut tree was suggested as a possible alternative.
• PHARMAC staff encouraged discussion on the purpose and bold goal as stated in the draft strategy. Again, there were mixed feelings as to how well both statements resonated with Pacific. Many suggestions were provided about how both could be reframed more appropriately.
• A number of attendees at fono noted the importance of reflecting different Pacific language and culture throughout the Strategy, rather than primarily Samoan. Other cultures need to feel they can see themselves represented.
• While fono attendees were often grateful for PHARMAC coming to the community, it was noted that lots of government agencies come to the community, tick the box, and do not return. PHARMAC was challenged to ensure this is not the case with this engagement. Relatedly, it was noted the importance of going to smaller communities as well as the main city centres.

“This is a great first step, but we need to continue the conversation and keep engaging with the Pacific community for this strategy to be effective.”

• One attendee noted the importance of ensuring when PHARMAC reviews a treatment’s therapeutic effectiveness they should also do so by ethnicity.
• A number of attendees asked what action will occur as a result of the strategy. We heard that it is important that results are reported back to the community and that PHARMAC maintain contact. This point was also reflected in a number of the written submissions.
• One attendee reiterated the importance of having an equity lens on the strategy and being explicit about the current inequities that exist. This view was also expressed in a written submission, noting that inequity in relation to primary care access is an issue that needs to be acknowledged.
• A written submitter requested that PHARMAC be more explicit about what an ‘eligible person’ is and also acknowledge the impact of its decisions on people living in the islands.