Abstract

Public involvement in applied health research in the UK has become a pre-requisite for receiving funding from some bodies including the National Institute of Health Research. However, much of this involvement has been criticized as being tokenistic with an unequal power dynamic whereby the public voice is consulted but may be ignored. To redress this imbalance more participatory methods of involvement, such as co-production have emerged. This paper explores the relationship and power dynamic between researchers and public partners through the thematic analysis of interviews with fourteen researchers and six public contributors who were involved in projects that were identified as having many features associated with inclusive co-produced research. Public involvement was valued but the integration of scientific and lay knowledge on an equal basis was problematic. In practice, “co-opted relationships” were most common whereby public partners were slotted into a designated role created for them by the researcher/research team. There were though some examples of more equal partnerships being established to share power and decision-making including two cases where the research idea was initiated by the public partner. However, establishing an equal relationship and sharing power was constrained by the hierarchical nature of applied health research as well as issues around governance and accountability. Specifically, the positivist paradigm that predominates in applied health research and tends to privilege classically scientific ways of thinking, was a barrier to experiential knowledge being equally valued. This demonstrates the challenges inherent in establishing equal relationships and suggests that a transformation of research practices, culture and hierarchies is required for power sharing to become a reality. Specifically, the culture of applied health research needs to embrace more democratic participatory approaches, such as those used in research originating from the service user movement, as it is within these ways of working that public partners can more readily share power.

Highlights

  • There is a proliferation of experiential or lay expertise in current knowledge societies and a growing number of well-qualified citizens are knowledgeable and interested in issues that were previously the exclusive domain of professionals and scientists

  • Role of public partners: they are a necessary and valued part of team with a unique perspective Public involvement (PI) not valued by parts of the scientific establishment Public partners need support, training and management Public partners are empowered through their involvement Public partners are grateful for the opportunity Need to build trust/relationships between researchers and the public partners Need to share power between researchers and the public User led research Governance and bureaucracy of research creates logistical challenges

  • A user-led relationship Constraints/barriers linked to public involvement in applied health research and developing outcome measures as well as project oversight

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Summary

Introduction

There is a proliferation of experiential or lay expertise in current knowledge societies (see Lambert and Rose, 1996; Grundmann, 2017) and a growing number of well-qualified citizens are knowledgeable and interested in issues that were previously the exclusive domain of professionals and scientists. This is pronounced in the world of health research where people with a health condition have a wealth of experiential expertise to draw upon. Our definition of applied health research includes research into treatments, devices, and procedures, and translation into practice to improve care. A PI infrastructure has subsequently developed whereby research organizations and funders develop relationships with members of the public, patients and charitable health organizations to ensure that PI is embedded in research (Department of Health, 2015)

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