Co-payments are the government-set amount that patients pay toward the cost of each prescription medication, with the remainder being paid under the Pharmaceutical Benefits Scheme (PBS). A large co-payment rise was implemented in January 2005, increasing the cost of prescriptions by approximately 21%. This project explored the impact of this increase on consumers.
From the researcher – Anna Kemp
Why did you want to involve consumers or community members in this project?
This research involved analysing existing datasets (e.g. hospital records, prescription claims etc.) with all the identifying information about the individuals removed before I receive the records. This meant that I had no contact with the ‘participants’ of my research and so I missed the ‘human face’ of the issues I studied. I wanted to involve consumers and community members so I could understand my research better.
Did you put anything in place before you started?
Senior staff on this project were very committed to involving consumers and community members. When they designed the project and applied for funding, they built in time and money for consumer and community participation.
At what stages did you decide to involve consumers or community members and why?
Consumers and community members were involved in the interpretation of findings, dissemination of findings, and in suggesting the direction for future research.
What methods did you use to involve them?
We had consumer and community representation on the Project Advisory Committee. We also held a community conversation to share the project findings, develop policy solutions, and seek ideas for future research priorities.
Who did you involve?
A consumer representative from the Health Consumers’ Council of WA sat on our Project Advisory Committee, and we publicly advertised for any interested consumers, carers or community members to attend our community forum.
How did you find people to involve?
We recruited our consumer representative from the Health Consumers’ Council, and advertised on radio and in the community newspaper for people to attend our community forum.
How did you support people to be involved?
We provided the consumer representative and forum attendees with an honorarium to cover their time and travel expenses. We also provided refreshments and parking whenever we asked a consumer or community member to come to us.
Did you evaluate the participation activities?
What made the involvement work well?
I think the main things were organisation, lots of opportunities for people to provide feedback, and respect. In terms of organisation, we planned our agenda and discussion questions ahead of time, and provided these to consumers and community members to keep the conversation targeted. We also gave handouts of all the slides we presented so people attending could have their own copy to write notes and take away with them. We wanted to make sure everyone could have their say and was treated with respect. As well as giving people their chance to speak, we had ‘bright ideas’ slips of paper on all tables so they could leave us with any thoughts they didn’t get to discuss. We also had an experienced facilitator coordinating the discussion so that we (the researchers) could focus on writing down everything we needed.
What difference did it make to involve consumers/community members in this project?
Involving consumers and community members made a huge difference to my research. When I was initially trying to get my work published reviewers and editors wanted me to include policy suggestions to help consumers. I realised I didn’t have the experience to make any such suggestions. I have expertise in analysing large data sets – but I’m not an expert in what it’s like to use multiple medicines, or cope with a chronic illness, or in deciding whether to buy medicines or pay the gas bill. Hearing about the lived experience of consumers and community members, and asking them what policies would help them, was enormously helpful and humbling. They came up with feasible policy solutions that would never have occurred to me and that I would never have read in the scientific literature.
How would you advise other researchers about planning consumer and community participation in research?
Do it! Do it as early as possible in the research process! Listen and learn.
From the consumer – Michele Kosky
How did you get involved in the project?
I was invited to become involved in my role as Executive Director at Health Consumers’ Council.
What was your role?
I was part of a reference group.
What made the involvement work well for you?
It was time limited, and the scope, purpose and the role of the reference group was explained with care and clarity. And the people were kind and helpful and expectations were managed.
How did your involvement make a difference?
I think we all contributed by reflecting on our experience – either our own or family members – and the challenges of the complexities of medicines, including confusion about co-payments and what the expected contribution would be, what could be afforded and the lack of information for consumers about co-payments.
Has it made a difference to you personally or to the other consumers or community members who were involved?
The difference it made to me (you can never underestimate what you will learn from other consumers) was to be aware of and advocate for a better method of explaining costs to consumers and the reason for the costs and the concessions people might have and not be aware of. Co-payments for people on low or fixed incomes can make access to medicines problematic if other priorities are seen as more important for survival.
How would you advise other researchers when they are planning to involve consumer or community members in research?
For researchers, involving consumers in research requires clarity about the scope of the project, what will be required in terms of time and preparation, and listening to the consumers – not just tokenism. And of course some education about research (e.g. what we think, what we know and what we can prove), data, analysis and conclusions.