This is commonly referred to as having a consumer or community representative. If using this method, try to involve at least two consumers or community members. Being the only consumer or community member on a research team can be daunting, particularly if the group is large.
Having more than one person can also bring wider perspectives. It is important to involve people who feel confident enough to speak out when meeting with a group of professionals and experts. Involving people who are connected to, or have membership of, a consumer or community organisation can bring the wider perspective of the organisation to the research team.
Where do you find them?
It may be helpful to approach health consumer, community or non-government organisations or contact a group that has an interest in your research topic or area e.g. a support group.
Putting it into practice:
Breast cancer Environment and Employment Study
The School’s Breast Cancer Environment and Employment Study had a consumer representative on their project advisory group. Researchers felt the consumer representative had a very valuable role in the study, as her advice was considered and sensible as well as bringing a different perspective. The Chief Investigator gave the following example to highlight her contribution:‘We had a computer glitch and lost eleven interviews. We were just going to mark them as missing rather than bother the participants. But our consumer rep thought that we should phone them and explain the problem, and let them decide if it was worth their time to re-do the interviews (making it really clear that we realised it was a big ask and we would understand if they didn’t want to). And so we did, and all the participants agreed to do the interview again’