Abstract
BackgroundHigh quality public engagement and involvement (PEI) in data-intensive health research is seen as one way of ensuring that social legitimacy, i.e. a social license, is conferred through public acceptance of the need for research use of their data. This is a complex research area, and portfolios of involvement have been suggested, but not yet evaluated, to support the role of public contributors. The study aim was to evaluate if and how membership of a data-intensive research public forum can act as a mechanism for enhancing members’ personal development. Our objective was to understand the circumstances and mechanisms that help to explain how, why and for whom involvement with a public forum enhanced those members’ personal development.MethodQualitative data were collected from 15 current and previous members, via semi-structured interviews, notes from meetings, and consultations with and feedback from members. Data were critically compared, contrasted and reviewed until no new themes could be discerned and then condensed into context-mechanism-outcome (CMO) configurations. Realist evaluation was used to generate a theoretical and empirical appreciation of the contextual circumstances and mechanisms which help to explain the extent to which involvement with a public forum would enhance members’ personal development and, if so, how, why, and for whom.ResultsThree CMO configurations were identified. All of them showed that using the portfolio facilitated growth in forum members’ personal development, but only where the members valued using the portfolio. This was particularly so for female members. Members valued the portfolio in one or more of three ways: as a tool to record and evidence activities, to facilitate reflective practice or as a guiding framework.ConclusionsData analysis and consideration of the three CMO configurations suggests a refined middle range theory that ‘The use of a portfolio as a framework for learning in a public forum will facilitate members’ personal development if they value its use as a framework for learning’. Further work is needed to confirm these findings both elsewhere in data-intensive health research and in other complex research areas using public forums for PEI.Plain English summaryPublic engagement and involvement in health research is now well established and makes a valuable contribution to the research process. However, little is known about its impact on participants. This article investigates how involvement in a data-intensive health research public forum impacts on public forum members, rather than the research process. Personal involvement portfolios were used to support their involvement work and help evaluate if and how involvement in research activities enhanced members’ personal development. Taking a realist evaluation approach, ‘Context-Mechanism-Outcome’ configurations were used to explore how membership of a public forum might enhance public forum members’ personal development. The Context-Mechanism-Outcome configuration refers to an exploration of what influences the extent to which an intervention is successful or unsuccessful in producing positive outcomes and tries to identify the reasons why it is successful for some and unsuccessful for others. However, evidence from this realist evaluation recommends that engagement and involvement should always be underpinned by procedures which ensure that public contributors receive ongoing and tailored guidance and support throughout the process.
Highlights
High quality public engagement and involvement (PEI) in data-intensive health research is seen as one way of ensuring that social legitimacy, i.e. a social license, is conferred through public acceptance of the need for research use of their data
The Context-Mechanism-Outcome configuration refers to an exploration of what influences the extent to which an intervention is successful or unsuccessful in producing positive outcomes and tries to identify the reasons why it is successful for some and unsuccessful for others. Evidence from this realist evaluation recommends that engagement and involvement should always be underpinned by procedures which ensure that public contributors receive ongoing and tailored guidance and support throughout the process
Realist evaluation generates what is known as a middle range theory (MRT), described as an “account of the processes that explain how an intervention leads to a particular outcome” [29]
Summary
High quality public engagement and involvement (PEI) in data-intensive health research is seen as one way of ensuring that social legitimacy, i.e. a social license, is conferred through public acceptance of the need for research use of their data. Research being carried out ‘with’ or ‘by’ members of the public (rather than ‘to’, ‘about’ or ‘for’ them) is playing an increasingly important part in improving the conduct and quality of research [1,2,3,4] It can improve participant information materials and increase participant recruitment and retention [1, 5]. “research conducted through linkage and analysis of data from one or more sources, especially health-related data”), the term used internationally to describe this input is public engagement and involvement (PEI) [10, 11] By this term, we mean a variety of activities for the purposes of “raising awareness of current research, consulting members of the public on their views about health research, working in partnership, to empowering members of the public to play a role in shaping current or future research or governance practices” [11]
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