The use of patient and public involvement and engagement in the design and conduct of implementation research: a scoping review.

Abstract

Background: Most implementation research focuses on understanding and changing health professionals' work practices. While Patient and Public Involvement and Engagement (PPIE) in applied health research is recognised as best practice, and is often a requirement for funders globally, little is known about the role of patients and the public in implementation research.

Methods: Guided by Arksey and O'Malley's framework, we conducted a scoping review to categorise PPIE in the design and conduct of implementation research, including how patients and the public have been involved, the reported impact of patient and public involvement, and the reported benefits and challenges to involving patients and the public in implementation research. We searched four databases: MEDLINE, Embase, CINAHL, and SCOPUS. To be included, studies had to report some form of PPIE in the design and conduct of implementation research. Information about each study was extracted using a structured data extraction form. Data was collated and summarised.

Results: Of the 535 unique records identified, 12 were included. Analysis of the eligible studies found eight different types of PPIE activities. Researchers mostly consulted with patients and members of the public via feedback sessions, committee representation and roundtable discussions. Barriers and enablers were usually researcher related and their attempts to build, maintain, and negotiate relationships with public contributors over time. Resources and financial remuneration were also key. Most studies (n = 7) reported that engaging community members in the design and implementation of community-based programs and trials enhanced cultural appropriateness, and the likelihood of sustainability. However, there was little formal evaluation of the use of PPIE.

Conclusion: This study can be used to design and guide future PPIE in implementation research. Given the inconsistent, and often absent, reporting of PPIE activities and barriers and enablers across the included studies, future studies should describe and evaluate the execution of PPIE in implementation research to advance practices in this field.

Registration: The review was registered on Research Registry (reviewregistry1552).