Patient involvement in setting research agendas

Abstract

Traditionally, patients and their families have two roles in health research: as research subjects, providing data at the request of researchers, and as fundraisers, supporting research and researchers. These roles are readily apparent in the area of research into inflammatory bowel disease, including colitis, and Crohn's disease, on both sides of the Atlantic. Growing evidence, however, suggests that health research agendas do not always reflect patients' priorities. Welfare et al. (this issue) add to the evidence by eliciting patients' priorities for colitis research. Methods for bridging patients' views and research agendas range from social science to deliberative public debate. In the first of these, social researchers, such as Welfare et al. (this issue), elicit and interpret patients' views and compare these with current research agendas. In the second, patients are supported and encouraged to engage in debates about research, whereby they bring their own interpretations and influence to the health research community. Organized colitis patient groups, with their current interests and alliances with research, are well placed to build on the work of Welfare et al., in partnership with researchers with the aim of planning research that meets the full range of their needs.