UK research funding bodies' views towards public participation in health-related research decisions: an exploratory study.

Jennifer E Van Bekkum,Shona Hilton

doi:10.1186/1472-6963-14-318

Abstract

BackgroundA challenge facing science is how to renew and improve its relationship with society. One potential solution is to ensure that the public are more involved in the scientific process from the inception of research plans to scientific dissemination strategies. However, to date, little is known about how research funding bodies view public participation in research funding decisions, and how they involve the public into their strategies and practices. This paper provides insights into how key representatives working in the UK non-commercial research funding sector perceive public participation in health-related research funding decisions and the possible implications of these.MethodsWe conducted qualitative semi-structured interviews with 30 key stakeholders from 10 UK non-commercial research funding bodies that either partially or exclusively fund health-related research. The findings were written up in thematic narrative form.ResultsThe different disciplines that encompass health research, and their differing frames of ‘science and society’, were found to influence how research funding bodies viewed and implemented public participation in research funding decisions. Relevant subsets of the public were more likely to be involved in research funding decisions than lay public, which could be linked to underlying technocratic rationales. Concerns about public participation stemmed from the highly professionalised scientific environment that the public were exposed to. Additionally, from a more positivist frame, concerns arose regarding subjective views and values held by the public that may damage the integrity of science.ConclusionUnderlying assumptions of technocracy largely appear to be driving PP/PE within the research grant review process, even in funding bodies that have overtly democratic ideals. Some conceptions of technocracy were more inclusive than others, welcoming different types of expertise such as patient or research-user experiences and knowledge, while others suggested taking a narrower and more positivist view of expertise as techno-scientific expertise. For research to have its maximum impact when translated into healthcare, health policies and health technologies, there needs to be sensitivity towards multiple frames of knowledge, expertise and underlying values that exist across science and society.

Highlights

A challenge facing science is how to renew and improve its relationship with society
An important note to make before discussing the findings is that terminology for public involvement in deliberative and decision-making practices differed across participants’ accounts
Conceptions of participation/public engagement (PP/public engagement (PE)) Across the research funding bodies, participants held different conceptions about the function of PP/PE within research generally. Those aligned with applied health and social sciences research commonly spoke of the importance of actively involving the public perspective in research decision-making and planning, as their work often aimed to have relatively direct impact on people’s lives

Summary

Introduction

A challenge facing science is how to renew and improve its relationship with society. To date, little is known about how research funding bodies view public participation in research funding decisions, and how they involve the public into their strategies and practices. Within UK policy, public participation has been presented as one solution to help renew and improve society’s trust, interest and relationship with science [1,2]. Holding the ‘purse strings’ to large amounts of money, funding bodies have the authority to help shape research processes and practices. This power has arguably increased in recent years in the UK context, in part due to political reforms such as the Research Excellence Framework (REF)b and austerity measures that have decreased researchers’ financial security and increased pressures to acquire research funding [11]

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