Great expectations for participatory research: what have we achieved in the last ten years?

Abstract

Service user involvement in research used to be of the kind where individuals would be the “subjects” of research, implying a sense of exposure and even subjugation in a setting where all the power lies with the experimenter. It has now been more than ten years since P. Trivedi and I provided a guide on how to move research from individuals being passive subjects to becoming equal partners (1). It is certainly time to reflect on whether anything has changed. The involvement of service users was thought to be beneficial in a number of different ways. In health care research, it makes the results more relevant to the community which it is aimed to benefit. Moreover, in the new world of reduced research resources, it is also likely to save money, because research involving consumers in formulating the questions, and particularly how they are asked, makes the research more valid and the science likely to proceed at a quicker pace. In the last ten years, we have learnt one lesson: to call our subjects “participants”. But is there any evidence that this has changed the power relationships? Does it mean more than learning to use the more politically correct term and one emphasized in most journals' publication style guidance? As well as examining whether naming has indeed affected research and particularly researchers, I also investigate whether there are data on how it might have affected our research outcomes. Although the movement to more participatory research is of interest to the whole world, I have taken the UK as a central (and optimistic) example of how things can change with support and small financial investments. This is not just because of my personal research base, but also because there are few countries which have really taken the role of service user researchers and service user involvement as seriously as the UK, as judged by the number of reports in the peer reviewed literature.