What does it mean to involve consumers successfully in NHS research? A consensus study

This study aims to obtain consensus on the principles and indicators of successful consumer involvement in NHS research and to find out which indicators of success are most important.

Abstract

OBJECTIVE: To obtain consensus on the principles and indicators of successful consumer involvement in NHS research. DESIGN: Consensus methods were used. An expert workshop, employing the nominal group technique was used to generate potential principles and indicators. A two-round postal Delphi process was used to obtain consensus on the principles and indicators. SETTING AND PARTICIPANTS: Participants were drawn from health, social care, universities and consumer organizations. A purposive sampling strategy was used to identify people who had experience and/or knowledge of consumer involvement in NHS research. Six researchers and seven consumers participated in an expert workshop. Ninety-six people completed both rounds of the Delphi process. MAIN OUTCOME MEASURES: Consensus on principles and indicators of successful consumer involvement in NHS research. RESULTS: Eight principles were developed through an expert workshop and Delphi process, and rated as both clear and valid. Consensus was reached on at least one clear and valid indicator by which to measure each principle. CONCLUSIONS: Consensus has been obtained on eight principles of successful consumer involvement in NHS research. They may help commissioners, researchers and consumers to deepen their understanding of this issue, and can be used to guide good practice.