Two research projects funded by the National Health and Medical Research Council and conducted at The University of Western Australia School of Population Health used linked state and Commonwealth health information to investigate and identify:
- Evidence on how best to use the efforts of Australian GPs to obtain better outcomes in patients aged 65+ years who suffer from chronic diseases
- Priorities for tackling the current epidemic in Australians aged 65+ years suffering from side effects of their medications
2006 and 2007: Community forums
In collaboration with the Health Consumers’ Council WA, three community forums were held to seek community feedback about the projects. The forums were advertised through the Health Consumers Council’s networks and seniors’ community organisations. The forums were attended by 104 people from across the metropolitan and outer metropolitan areas.
At the conclusion of one of the workshops for researchers, health professionals and the Panel, the Chief Investigator stated his appreciation of the Panel and that he would not conduct research in the future without involving consumers and the community.
2007: Establishment of a consumer panel
The Seniors Consumer Panel was established for ongoing consumer involvement throughout the research projects. The Panel provided:
- A consumer perspective and input to the research team
- Ongoing advice and guidance regarding issues of importance to health consumers on long-term illness and medication safety
- Representative membership on the research management team
2008: Consumer panel input into focus groups and workshops
The Panel had input into the development of a series of focus groups which were held in 2008 to further explore key topics and issues raised by consumers at the three community forums. Members of the consumer panel attended at four stakeholder workshops with researchers and health professionals to discuss research findings.
2010: Presenting at conferences
Members of the Panel presented about the consumer participation activities in the two research projects at the National Primary Health Care Research Conference in Melbourne in 2009 and Darwin in 2010.
The impact of involvement in this project
There were unexpected by-products of the consumer involvement activities, specifically about the following issues:
- The use of non-specific dosing instructions on prescription medicines such as:
- ‘Take as directed by Dr’ or ‘Take as directed when required’
- The use of Latin abbreviations such as ‘bd’, ‘gid’
- Confusion about packaging and labelling of generic medicines
What was learned from involving consumers in this research?
Comments from researchers“Consumers should be involved in projects from the beginning and they add much value to how the planning develops and focus areas of the research – keeps things in perspective and focused on what’s important and what makes a difference.” “Including the lived experience of seniors and carers about chronic illness and taking multiple medicines was vital to this important research. The consumers and carers provided insight and a perspective that could not have been obtained from the linked data alone.” “This positive experience of consumer and community involvement has led to subsequent research projects on medicines costs having good community involvement.”
All stakeholders were asked about their expectations of consumer and community participation at the beginning and the end of the project.
At the beginning
“I thought that we would be merely subjects for researchers but welcomed the opportunity to contribute”
“Lacked any major expectation due to no real experience with consumer participation”
“I hoped to hear what consumers and the community opinions truly were, in comparison to what health professionals assumed they were”
“Very little. I thought it would be like every other inquiry, lots of talk and no action”
At the end
“Their experiences could potentially provide some ideas as to why we are observing certain results ”
“I now believe that consumer input can make a difference”
“That consumer participation is established and legitimised and added so much value in such a common sense way”