Evaluating patient and public involvement in health research: from theoretical model to practical workshop

Abstract

BackgroundThere is a growing literature on evaluating aspects of patient and public involvement (PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four‐dimensional theoretical framework for understanding these interactions.AimWe explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research.MethodsWe conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants’ responses were then discussed and analysed as a group.ResultsThe three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not.DiscussionThe framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future.

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

“…Our data set also revealed a number of examples of efforts to operationalize a theoretically derived framework using some kind of practical workshop. For example, the Public Involvement Impact Assessment Framework (PiiAF) was developed using a literature review and Delphi panel to formulate draft principles and a series of facilitated workshops to address usability . Other examples of workshop formats included De Wit et al's “serious play” workshop to surface and explore researchers' willingness to share power with lay partners, and Dillon et al's facilitated workshop to finalize and operationalize their Critical Outcomes of Research Engagement (CORE) metrics for measuring the impact of lay involvement.…”

Evaluating patient and public involvement in research

“…Progress has been made in defining and measuring high quality PPI in different contexts,17181920 how to report it,21 and how to assess its effect 1622. International collaborations are also helping to foster involvement science and methodological rigour 23…”

Patient and public involvement facilitators: Could they be the key to the NHS quality improvement agenda?

“…Early forms of PPI were triggered by activists and lobbyists wanting more public accountability in health services, for example Community Health Councils in the 1970s . The nature of PPI has evolved with the notion of the health‐care ‘consumer’ and quasi‐marketization during the 1980s and 1990s . It has been argued that PPI encompasses a wide range of activities that can be summarized as the exercise of ‘choice’ (consumers choose which service to access), ‘voice’ (consumers say what they want from their own care and wider services) and ‘exit’ (consumers can leave if they are unhappy) …”