Elsevier

Health Policy

Volume 69, Issue 2, August 2004, Pages 229-238
Health Policy

Consumer involvement in research projects: the activities of research funders

https://doi.org/10.1016/j.healthpol.2003.12.011Get rights and content

Abstract

This paper reports findings from a postal questionnaire survey and in-depth interviews with UK funders of health-related research that explored whether, why and how they promote consumer involvement in research projects.

Many UK funders of health-related research are adopting a policy of promoting consumer involvement in research projects. Telephone interviews revealed they have several reasons for doing so, and that they vary in the ways they encourage and support researchers to involve consumers. For some, descriptions of consumer involvement in a research proposal are important for project funding decisions. They recognized a need for flexibility when assessing consumer involvement in different contexts.

We suggest that funders should continue to work to clarify what they consider to be the parameters of acceptability in terms of consumer involvement and ensure that ‘flexible’ criteria are fairly applied. Researchers should be aware of particular funders’ views when applying for project funding.

Introduction

Consumer involvement in health-related research is increasingly advocated. Reasons for this include beliefs that the ‘public’ have a right to influence the agenda for publicly funded research and that consumer involvement in research activities allows for greater transparency of the research process, makes funding organizations and researchers more accountable for the research they carry out, and may lead to health-related research being more valued and trusted by members of the public. It has also been argued that people who have experienced particular health problems and used particular health services can improve the quality of research carried out by providing insights that can contribute to the development, conduct, interpretation and use of research relating to these health conditions and services [1], [2], [3], [4], [5].

Internationally, various government policy groups and public sector funding bodies have made commitments to increase the extent to which consumers are enabled to influence the scope, nature and use of health-related research [6], [7], [8]. Efforts have been made, for example, to involve consumers in the processes of setting research agendas and awarding project grants, to include consumers as members of clinical trial steering committees, and to engage consumers in assessing the outcomes of research [8], [9], [10], [11], [12], [13].

This paper reports on a two-part study of organizations in the UK that fund health-related research. The first part involved a postal survey of funders to gain an initial overview of their consumer involvement activities and to facilitate the identification of a sample of organizations for a more in-depth investigation. The second part of the study involved semi-structured telephone interviews with a purposive sample of funders that reported involving consumers in their research activities to explore why and how they were doing this. This paper focuses on why and how funders promote consumer involvement in individual research projects.

Section snippets

Methods

In February 2002, we surveyed UK organizations that fund health-related research to identify which funding organizations were involving consumers in their research activities. We included public and voluntary sector organizations that award research grants through open competition and whose research expenditure is greater or equal to £100,000 per annum. Our survey included National Health Service Research and Development (NHS R&D) Programmes, the Medical Research Council (MRC), a health-focused

Results of the postal survey

Of the 88 people contacted, 69 (78%) replied. One indicated that their organization no longer funded research. Four programme managers from one organization to whom we had sent separate questionnaires returned one questionnaire to cover all four programmes. In total, 68 of the 84 eligible respondents completed questionnaires giving an adjusted response rate of 81%.

Forty-two (62%) respondents indicated that their organizations currently tried to involve consumers in aspects of their research

Results of the in-depth semi-structured telephone interviews

Of the 20 funding organizations approached 17 agreed to take part. One medical research charity did not respond to several email requests and two declined because they did not think their current consumer involvement activities warranted a more detailed analysis.

The organizations approached varied in terms of their constitutions, missions and structures, the range of health conditions they covered, the types of research they funded (basic and/or applied) and their methods of funding

Discussion

Our postal survey provided us with an initial overview of the current practices of consumer involvement among funders of health-related research in the UK. Nearly two-thirds of respondents reported involving consumers in some aspects of their research work or planning to do so in the near future. Those who indicated that they didn’t involve consumers in their research work were not asked why this was so. We suspect that non-respondents to our study were perhaps less likely than respondents to

Conclusions

Many UK research funders of health-related research are adopting a policy of encouraging researchers to involve consumers in research projects. Most acknowledge that different forms of consumer involvement will be appropriate for different types of research project and that uncertainties remain about how best to judge the quality of consumer involvement in research proposals. Funders should continue to work to clarify what they consider to be the parameters of acceptability in terms of consumer

Acknowledgements

We would like to thank Professor Paul Dieppe at the MRC Health Services Research Collaboration and Dr Sandy Oliver at the Social Science Research Unit, University of London, Institute of Education for helpful comments during the development of the postal questionnaire and to Carol Bugge, Adrian Grant, Leif Nøttestad and Zoe Skea for feedback on a draft of this paper. The project was funded by the MRC Health Services Research Collaboration. The Health Services Research Unit receives funding from

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