Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot

Abstract

Background: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous.

Objectives: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability.

Search strategy: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts.

Inclusion criteria: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health-related research.

Data extraction and synthesis: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co-design workshops, we tested evidence-based resources based on the review findings.

Results: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power-focused; priority-setting; study-focused; report-focused; and partnership-focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence-based facilitator notes for a "build your own framework" co-design workshop.

Conclusion: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off-the-shelf framework may be less useful than a menu of evidence-based resources which stakeholders can use to co-design their own frameworks.

Keywords: codesign; framework; hermeneutic review; patient and public involvement; systematic review.

Figure 1

Study flow chart

Figure 2

Number of frameworks on patient and lay involvement in research published annually (includes academic and grey literature)

Figure 3

Example of framework for patient and lay involvement in research priority‐setting, reproduced with permission from Pollock et al36

Figure 4

Example of study‐focused framework for patient and lay involvement in research, reproduced with permission from the NIHR Research Design Service51

Figure 5

Example of study‐focused framework for measuring the impact of patient and lay involvement in research, reproduced under creative commons licence from Dillon et al73