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Cited by 88Mental Health and Patient InvolvementCommunity Health and DevelopmentHealth Policy Implementation Science

Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study

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Snape, D, Kirkham, J, Preston, J, Popay, J, Britten, N, Collins, M, Froggatt, K, Gibson, A +3 more·2014·BMJ Open
DOI 10.1136/bmjopen-2013-004217PMC PMC3902382
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Abstract

OBJECTIVE: There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI. DESIGN: Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. SETTING: The UK health and social care research community. PARTICIPANTS: Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review. RESULTS: We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whether the purpose of PI in health and social care research is to bring about service change or generate new knowledge. There were large differences by group in the percentages endorsing the ethical justification for PI and the argument that PI equalises power imbalances. With regard to practical implementation of PI, research support infrastructures were reported as lacking. Participants reported shortcomings in the uptake and practice of PI. Embedding PI practice and evaluation in research study designs was seen as fundamental to strengthening the evidence base. CONCLUSIONS: Our findings highlight the extent to which PI is already embedded in research. However, they also highlight a need for 'best practice' standards to assist research teams to understand, implement and evaluate PI. These findings have been used in developing a Public Involvement Impact Assessment Framework (PiiAF), which offers guidance to researchers and members of the public involved in the PI process.

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  • Conflict or tension, while posing difficulties to resolve, is not necessarily undesirable and, indeed, is evidence of engagement, so much so that where it was managed well, through, for example, clear guidelines, dialogue and consensus, it was seen to add to the strength of the case study in terms of how embedded PPI was.

    “Conflict or tension, while posing difficulties to resolve, is not necessarily undesirable and, indeed, is evidence of engagement, 105,174 so much so that where it was managed well, through, for example, clear guidelines, dialogue and consensus, it was seen to add to the strength of the case study in terms of how embedded PPI was.”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [174]

  • Different value sets are seen to lead to diverse constructions of PPI and can affect whether or not and how PPI is evaluated.

    “However, whichever labels are used to define value sets, it is clear that different value sets are seen to lead to diverse constructions of PPI, 28,174 and can affect whether or not and how PPI is evaluated.52”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [174]

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Research works printed but not linked: 2

  1. [26]Dalkey N Helmer O Delphi technique: characteristics and sequence model to the use of experts. Manag Sci 1963; 9: 458– 67
  2. [57]Peterson RA Albaum G Kerin RA A note on alternative contact strategies in mail surveys. J Market Res Soc 1989; 31: 409– 18

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Authors
Snape, D., Kirkham, J., Preston, J., Popay, J., Britten, N., Collins, M., Froggatt, K., Gibson, A., Lobban, F., Wyatt, K., & Jacoby, A.
Affiliations
  • University of Liverpool (GB)
  • Lancaster University (GB)
  • University of Exeter (GB)
Corresponding author
Jacoby, A
ORCID
Venue
BMJ Open
Publisher
BMJ
Published
2014-01
Volume
4
Issue
1
Pages
e004217
ISSN
2044-6055 (ISSN-L)
DOI
10.1136/bmjopen-2013-004217
PMC
PMC3902382
OpenAlex
W2110674337
Cited by
88
References
55
Citations by year
2026: 5 · 2025: 7 · 2024: 5 · 2023: 4 · 2022: 9 · 2021: 5 · 2020: 7 · 2019: 9 · 2018: 8 · 2017: 8 · 2016: 6 · 2015: 10 · 2014: 4 · 2013: 1
FWCI
16.86
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • BMJ Open (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Lancaster EPrints (Lancaster University) (acceptedVersion, cc-by)
  • UWE Research Repository (UWE Bristol) (submittedVersion, cc-by)
  • HighWire Press Open Archive (submittedVersion)
  • Research Explorer (The University of Manchester) (submittedVersion)
Funders
  • McGill University
  • Medical Research Council
Topics
  • Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
  • Health Sciences › Health Professions › General Health Professions › Community Health and Development
  • Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
Keywords
public involvement in research, health and social care research, research value, stakeholder perspectives, consensus and conflict, representativeness, research bias, power imbalance, best practice standards
MeSH terms
Community Participation, Delphi Technique, United Kingdom, Health Services Research, Humans, Social Values, Guidelines as Topic, Consensus, Community-Based Participatory Research

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