Consumer involvement in setting the health services research agenda: persistent questions of value

Abstract

Interest in consumer involvement in health services research started to gain momentum at around the same time that the MRC Health Services Research Collaboration (HSRC) was established. Consumer involvement was not the focus of a formal research programme within the HSRC, but HSRC members took opportunities to conduct three projects relating to consumer involvement in research agenda-setting activities. These were: (1) a comparison of the focus of published research relating to the management of osteoarthritis of the knee with clinicians' and patients' ideas about research priorities; (2) a survey that examined the consumer involvement policies of public- and voluntary-sector organizations that fund health services research in the UK; and (3) a citizens' jury that was convened to develop priorities for research relating to primary health and social care in the Bristol area. This paper reviews the findings of these projects and highlights the continued need for attention to underlying values in the development and evaluation of future efforts to involve consumers in research agenda setting.