Involving consumers successfully in NHS research: a national survey

OBJECTIVES: To investigate how far and in what way consumers are involved in NHS research. BACKGROUND: There is guidance from the UK Department of Health on involving consumers in research, but it is not known how these policies have been implemented. DESIGN: A national postal survey was conducted of 884 researchers selected randomly from the National Research Register, 16 researchers registered on the INVOLVE database and 15 consumers nominated by researchers who collaborated in the same research projects. SETTING: The survey participants were drawn from diverse settings including NHS organizations and universities. PARTICIPANTS: Researchers and consumers collaborating in the same projects. MAIN OUTCOME MEASURES: Details of how consumers were involved and the number of projects that met previously developed consensus-derived indicators of successful consumer involvement in NHS research. RESULTS: Of the 900 researchers who were sent a postal questionnaire, 518 responded, giving a response rate of 58%. Nine of the 15 consumers responded. Eighty-eight (17%) researchers reported involving consumers, mainly as members of a project steering group, designing research instruments and/or planning or designing the research methods. Most projects met between one and four indicators. CONCLUSIONS: This national survey revealed that only a small proportion of NHS researchers were actively involving consumers. This study provides a useful marker of how far the Department of Health's policy on consumer involvement in NHS research has been implemented and in what way.