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.

Realist Evaluation of Public Engagement and Involvement in Data-intensive Health Research

“…This will ensure that the modified MRT identified in this study can be fully evaluated and modified further if necessary. However, regardless of which approach is adopted to underpin PEI in research, evidence from this evaluation concurs with other studies which conclude that PEI should always be underpinned by procedures which ensure that participants receive ongoing and tailored guidance and support throughout the process [45][46][47].…”

“…The field of PEI therefore needs to expand who and how it recruits to PEI roles. A systematic review of frameworks designed to support PEI in research [47] grouped frameworks into five categories: power focused, priority setting, study focused, report focused and partnership focused. None of the frameworks could be categorised as having a personal development or social impact focus for the individuals who contribute to PEI in research or the broader public.…”

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

“…To address the need for means of determining the “return on engagement,” the aim of this paper was to scope, review and summarize the literature on monitoring and evaluation of patient engagement. Many publications present useful guidance for conducting patient engagement and assessing the quality . Evaluation studies focus mainly on qualitative methods and only occasionally link to specific outcomes .…”

Users' and researchers' construction of equity in research collaboration

“…User involvement is progressively becoming a routine element of health service research and is increasingly a common requirement for research funders . Although the importance of involving patients and the public in health‐care research is recognized, reviews of the literature find that users' roles are more often consultative than collaborative .…”

“…The designation ‘co‐production’ has been used in recent health service literature as a key factor in discussions of equity and partnership INVOLVE defines co‐production as ‘an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge.’ In this definition, power is depicted as the ‘holder’ of equity by constructing user involvement as a question of sharing power and influence. Several guidelines focus on issues related to partnership and power‐sharing in user involvement in research in an attempt to address the challenges which have been identified within user involvement in research . However, even though co‐production is portrayed as desirable, it is also described as utopian …”