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

TRISHA GREENHALGH; Lisa Hinton; Teresa Finlay; Alastair Macfarlane; Nick Fahy; Ben Clyde; Alan Chant

doi:10.1111/hex.12888

journal article Open Access Apr 22, 2019

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

TRISHA GREENHALGH

Lisa Hinton

Teresa Finlay

Alastair Macfarlane Nick Fahy

Ben Clyde Alan Chant

Health Expectations Vol. 22 No. 4 pp. 785-801 · Wiley

View at Publisher Save 10.1111/hex.12888

Abstract

AbstractBackgroundNumerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous.ObjectivesTo identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability.Search strategyKeyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts.Inclusion criteriaPublished, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research.Data extraction and synthesisData 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.ResultsOur 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.ConclusionThe 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.

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Details

Published: Apr 22, 2019
Vol/Issue: 22(4)
Pages: 785-801
License: View

Authors

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TRISHA GREENHALGH