Why involve consumers?
The reasons for involving consumers and the community in clinical research are many and varied. Some of these are described below
Consumers often possess invaluable first-hand knowledge of what it’s like to have a particular disease, illness or health condition. Often those living (or caring for someone) with a condition become experts in both the health condition and related symptom management.
As a result, consumers provide researchers with an alternative view based on their understanding of the condition. Their input also provides researchers with real insights into what consumers and the community think of their work.
The view that consumer involvement adds value to health and medical research is clearly articulated in the National Health and Medical Research Council and the Consumers Health Forum of Australia Statement on Consumer and Community Involvement in Health and Medical Research:
- Consumers, community members, researchers and research organisations working in partnerships, to improve the health and well-being of all Australians through health and medical research. Research informs health care decisions and research institutions, researchers, consumers and community members should work collaboratively to support, facilitate and value the contribution that consumers and community members make to research, and its development, conduct and communication.
- As beneficiaries of advances in health care, consumers and community members have an interest in promoting the translation of research into improved policy and practice. It follows that health and medical research should develop processes and systems to incorporate and support sustainable consumer and community involvement.
The Australian Government’s Medical Research Future’s Fund Strategy further outlines the importance of consumer and community engagement stating:
"There is a limited degree of consumer engagement and collaboration across the research pipeline, which impacts on the success of research outcome translation into clinical practice. Consumers and their families are the ultimate funders, users and beneficiaries of health and medical research".
There are many additional reasons why researchers and research organisations should involve consumers, as well as how consumers and the community may benefit from being involved. PDF versions of ‘reasons to involve’. There are also many reasons why consumers and the community may benefit from being involved. A summary can be downloaded: ‘benefits for consumers and the community’