Table 1 Reasons for community engagement in biomedical research priority-setting
Reason | Example quote |
|---|---|
Epistemic value | “… questions which, because we’re not patients we don’t think of them in the same way whereas the patients have questions or problems that they think need addressing which we don’t necessarily think about from a medical point of view.”—UK interviewee (10) “I think people with lived experience… I think academics, particularly in things like genomics; we have this interest in following things that are shiny, and kinda cool. Sometimes we may lose sight of the real reason as to why we are undertaking these sorts of activities. I think by having consumer involvement in research design, we can still be aspirational about the outcomes of research. So we can still have our…head in the clouds, but it keeps out feet on the ground and really grounded in lived experience, and the reality of these conditions that we are researching.”—Australian interviewee (05) |
Community ownership | “So they’re owning it… if you plan with them and you end up developing what they need, you’re not gonna ask them, you’re not gonna force them to use it, be it knowledge, it’s information or be it a product, it’s theirs and they use it.”—African interviewee (08) |
Equity | “…we don’t actually engage with consumers and with communities who are supposed to benefit from it from the beginning. And to me it’s just another way that equity and inequity kind of slips into our research, that no matter how much we say this research is good and it’s gonna benefit people, unless we actually have the people who it’s supposed to benefit with onboard at the beginning it’s actually going to harm them more than it’s gonna help them.”—Australian interviewee (05) |
Responsiveness | “In an ideal world as I said I think it is important that when a researcher decides to come up with their research idea, before actually develops their proposal, they should go to the community to find out whether that research idea will actually translate into solving a health problem that is there.”—African interviewee (02) |