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. 2014 Jan 10;4(1):e004217.
doi: 10.1136/bmjopen-2013-004217.

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

D Snape  1 , J Kirkham, J Preston, J Popay, N Britten, M Collins, K Froggatt, A Gibson, F Lobban, K Wyatt, A Jacoby
Affiliations

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

D Snape et al. BMJ Open. .

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.

Keywords: Conflict; Consensus; Delphi Technique; Health Research; Public Involvement; Values.

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Figures

Figure 1
Figure 1
What kinds of knowledge should inform health and social care research? Data taken from Round 1.
Figure 2
Figure 2
What are the purposes of public involvement in health and social care research? Data taken from Round 1.
See this image and copyright information in PMC

References

    1. Patient-Centred Outcomes Research Institute (PCORI) Patient-Centred Outcomes Research, University of Pittsburgh. http://www.pcori.org/research-we-support/pcor (accessed 26 Nov 2013).
    1. University of Western Australia Consumer and Community Participation Policy. http://www.sph.uwa.edu.au/ (accessed 26 Nov 13).
    1. McKenzie A, Hanley B. Consumer and Community Participation in Health and Medical Research. A practical guide for health and medical research organisations. Australia: University of Western Australia and Telethon Institute for Child Health Research, 2009
    1. Department of Health Research Governance Framework for Health and Social Care. 2nd edn London: Department of Health, 2005
    1. National Institute for Health Research (NIHR) Patients and Public. http://www.crncc.nihr.ac.uk/PI (accessed 18 Jun 2012).

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