Doing Your Own Patient Activist Research

The slogan ‘Do Your Own Research’ (DYOR) is often invoked by people who are distrustful, even downright sceptical, of recognised expert authorities. While this slogan serves various rhetorical purposes, it also expresses an ethic of inquiry that valorises independent thinking and rejects simple deference to recognised experts. This paper is a qualified defence of this ethic of inquiry in one of the central contexts in which it might seem attractive. I use case studies of patient activist groups to argue that these groups often engage in valuable independent research that advances biomedical knowledge. They demonstrate the value of ‘lay expertise’ and the necessity of not simply deferring to recognised experts. I also explain why patient activist groups often produce valuable biomedical knowledge: they are examples of what I call ‘research collectives’. Research collectives are research communities that differ from the traditional research communities we find in universities and research institutes in that their members typically lack formal relevant scientific credentials and training. But they are similar in that they have internal structures – training procedures, norms of discussion, venues for holding discussions – that facilitate the production of knowledge. I finish by suggesting some directions for future research.