Role of patient and public involvement in implementation research: a consensus study

Apr 17, 2018 | K. Gray-Burrows, T. Willis, R. Foy, M. Rathfelder, P. Bland, A. Chin, S. Hodgson, G. Ibegbuna, G. Prestwich, K. Samuel, L. Wood, F. Yaqoob and R. R. C. McEachan

BACKGROUND: Patient and public involvement (PPI) is often an essential requirement for research funding. Distinctions can be drawn between clinical research, which generally focuses on patients, and implementation research, which generally focuses on health professional behaviour. There is uncertainty about the role of PPI in this latter field. We explored and defined the roles of PPI in implementation research to inform relevant good practice guidance.

METHODS: We used a structured consensus process using a convenience sample panel of nine experienced PPI and two researcher members. We drew on available literature to identify 21 PPI research roles. The panel rated their agreement with roles independently online in relation to both implementation and clinical research. Disagreements were discussed at a face-to-face meeting prior to a second online rating of all roles. Median scores were calculated and a final meeting held to review findings and consider recommendations.

RESULTS: Ten panellists completed the consensus process. For clinical research, there was strong support and consensus for the role of PPI throughout most of the research process. For implementation research, there were eight roles with consensus and strong support, seven roles with consensus but weaker support and six roles with no consensus. There were more disagreements relating to PPI roles in implementation research compared with clinical research. PPI was rated as contributing less to the design and management of implementation research than for clinical research.

CONCLUSIONS: The roles of PPI need to be tailored according to the nature of research to ensure authentic and appropriate involvement. We provide a framework to guide the planning, conduct and reporting of PPI in implementation research, and encourage further research to evaluate its use.

PubMed Abstract

Gray-Burrows, K., Willis, T., Foy, R., Rathfelder, M., Bland, P., Chin, A., . . . McEachan, R. R. C. (2018). Role of patient and public involvement in implementation research: a consensus study. doi: 10.1136/bmjqs-2017-006954