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Cited by 400Mental Health and Patient InvolvementHealth Policy Implementation ScienceCommunity Health and Development

Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach

Open access
Oliver, S, Clarke-Jones, L, Rees, R, Milne, R, Buchanan, P, Gabbay, J, Gyte, G, Oakley, A +1 more·2004·Health Technology Assessment
DOI 10.3310/hta8150
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Abstract

OBJECTIVES: To look at the processes and outcomes of identification and prioritisation in both national and regional R&D programmes in health and elsewhere, drawing on experiences of success and failure. Also to identify the barriers to, and facilitators of, meaningful participation by consumers in research identification and prioritisation. DATA SOURCES: Electronic databases and interviews with UK consumers and research programme managers. REVIEW METHODS: A framework was devised for examining the diverse ways of involving consumers in research. It identified key distinguishing features as: the types of consumers involved; whether consumers or researchers initiated the involvement; the degree of consumer involvement (consultation, collaboration or consumer control); forums for communication (e.g. committees, surveys, focus groups); methods for decision-making; and the practicalities for implementation. Context (institutional, geographical and historical setting) and underpinning theories were considered as important variables for analysing examples of consumer involvement. This innovative framework was then applied to the review data from reports selected for inclusion and interviews. RESULTS: The study found 286 documents explicitly mentioning consumer involvement in identifying or prioritising research topics. Of these, 91 were general discussions, some of which included a theoretical analysis or a critique of research agendas from a consumer perspective, 160 reported specific efforts to include consumers in identifying or prioritising research topics and a further 51 reported consumers identifying or prioritising research topics in the course of other work. Detailed reports of 87 specific examples were identified. Most of this literature was descriptive reports by researchers who were key actors in involving consumers. A few reports were written by consumer participants. Fewer still were by independent researchers. Our conclusions are therefore not based on rigorous research, but implications for policy are drawn from individual reports and comparative analyses. CONCLUSIONS: Productive methods for involving consumers require appropriate skills, resources and time to develop and follow appropriate working practices. The more that consumers are involved in determining how this is to be done, the more research programmes will learn from consumers and about how to work with them. Further success might be expected if research programmes embarking on collaborations approach well-networked consumers and provide them with information, resources and support to empower them in key roles for consulting their peers and prioritising topics. To be worthwhile, consultations should engage consumer groups directly and repeatedly in facilitated debate; when discussing health services research, more resources and time are required if consumers are drawn from groups whose main focus of interest is not health. These barriers can largely be overcome with good leadership, purposeful outreach to consumers, investing time and effort in good communication, training and support and thereby building good working relationships and building on experience. Organised consumer groups capable of identifying research priorities also need to find ways of introducing their ideas into research programmes. Further research is suggested to develop and evaluate different training methods, information and education and other support for consumers and those wishing to involve them; to address the barriers to consumers' ideas influencing research agendas; and to carry out prospective comparative studies of different methods for involving consumers. Research about collective decision-making would also be further advanced by addressing the processes and outcomes of consensus development that involves consumers.

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  • Oliver et al. found detailed reports of 87 examples of PPI influencing the identification or prioritisation of research topics.

    “They found detailed reports of 87 examples of PPI influencing the identification or prioritisation of research topics.”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [102]

  • The review also highlighted multiple barriers to service users' ideas influencing research agendas, and a lack of collaborative working between the research programmes and lay people to address the way forward in collective decision-making.

    “It also highlighted multiple barriers to service users' ideas influencing research agendas, and a lack of collaborative working between the research programmes and lay people to address the way forward in collective decision-making.”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [102]

  • While these reports highlighted the collective experience of research programmes in involving patients and the public, gaps were identified in training and preparing lay people.

    “While these reports highlighted the collective experience of research programmes in involving patients and the public, gaps were identified in training and preparing lay people.”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [102]

  • Because of the nature of the evidence available, inconsistent reporting and the context-dependent nature of PPI, it was not possible to carry out an in-depth analysis of different kinds of impact, or to judge the quality of the evidence and determine how generalisable the results were.

    “However, as with Oliver et al.'s review, 102 because of the nature of the evidence available, inconsistent reporting and the context-dependent nature of PPI, it was not possible to carry out an in-depth analysis of different kinds of impact, or to judge the quality of the evidence and determine how generalisable the results were.”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [102]

  • In addition, the majority of included reports were descriptive accounts written by researchers rather than service user representatives.

    “In addition, the majority of included reports were descriptive accounts written by researchers rather than service user representatives.”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [102]

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Cites

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Research works printed but not linked: 16

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Authors
Oliver, S., Clarke-Jones, L., Rees, R., Milne, R., Buchanan, P., Gabbay, J., Gyte, G., Oakley, A., & Stein, K.
Affiliations
  • University College London (GB)
  • University of Southampton (GB)
  • National Childbirth Trust (GB)
  • University of Exeter (GB)
ORCID
Venue
Health Technology Assessment
Publisher
National Institute for Health and Care Research
Published
2004-04
Volume
8
Issue
15
Pages
1-148, III
ISSN
  • 1366-5278 (ISSN-L)
  • 2046-4924
DOI
10.3310/hta8150
OpenAlex
W1966897685
Cited by
400
References
57
Citations by year
2026: 4 · 2025: 5 · 2024: 15 · 2023: 8 · 2022: 10 · 2021: 24 · 2020: 13 · 2019: 17 · 2018: 9 · 2017: 14 · 2016: 15 · 2015: 15 · 2014: 27 · 2013: 11 · 2012: 19
FWCI
3.43
Type
journal article
Language
en
Open access
Licence
Locations
  • Health Technology Assessment (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • ePrints Soton (University of Southampton) (acceptedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • UCL Discovery (University College London) (submittedVersion)
Funders
Health Technology Assessment programme (97/19/02)
Topics
  • Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
  • Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
  • Health Sciences › Health Professions › General Health Professions › Community Health and Development
Keywords
consumer involvement, research agenda setting, research prioritization, health services research, evidence-based research, barriers and facilitators, consumer participation, collaboration framework, research funding allocation, consumer empowerment, research funding agencies, research leadership
MeSH terms
Community Participation, United Kingdom, Health Priorities, Health Services Research, Humans, Outcome and Process Assessment, Health Care, State Medicine, Evidence-Based Medicine, Organizational Case Studies

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