Check out this collective report recently published following a major study of public involvement in research (PIR) I was part of when working at Bristol UWE (2011-2013), funded by the National Institute of Health Research (UK). PIR is a policy term for the increasing trend in health sciences towards the involvement of members of the public (usually with relevant personal experience in the area of the study) in health and clinical research – i.e. not as research participants, but as active advisers to the research team. We carried out qualitative research in eight health sciences projects across England and Wales studying their practices of PIR.
With some people on the team, we are also about to submit for review a collective autoethnographic paper detailing some of the experiences of the academics and the lay researchers involved in the complex process of gaining permissions from the NHS trusts to conduct research in the project fieldsites. This proved particularly challenging for lay researchers as they did not easily fit the “professional expert” criteria around which these procedures are set.
The project work was a very interesting experience for me, as I learnt a great deal about the tensions and interactions at play in health sciences, a key sector where multiple actors converge, from the NHS to the major funders of health research and a variety of publics represented by different civil society associations and other organisations.