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      • Record: found
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      Values associated with public involvement in health and social care research: a narrative review

      review-article
      Author(s): , MA MSc (Hons) PhD 1 , , , BA MSc PhD 2 , , BSc PhD 2 , , BSc (Hons) PhD 3 , , BSc (Hons) MA PhD 2 , , BA (Hons) PhD 4 , , BA (Hons) PhD DClinPsy 3 , , BA MSc CQSW 3 , , RGN BSc (Hons) PGC MA 4 , , BSc MA 5 , , BA (Hons) MA 3
      Publication date (Electronic):
      Journal: Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
      Publisher: John Wiley and Sons Inc.
      Keywords: engagement, impact, involvement, participation, values

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          Abstract

          Background

          Much has been written about public involvement ( PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.

          Objective

          The narrative review reported here is part of a larger MRC‐funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework.

          Methods

          We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty‐four chapters in sixteen textbooks.

          Results

          Three overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) A system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values).

          Conclusion

          Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.

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          Most cited references15

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          Consumer involvement in health research: a review and research agenda.

          Cindy Cooper, Jonathan Boote, Nic R Telford (2002)
          The involvement of consumers in health research is now Department of Health policy within the UK. Despite the existence of policy directives, there is a dearth of knowledge on the effects of such involvement. This paper critically reviews the state of our knowledge on this issue, and maps out a research agenda with the aim of stimulating systematic, empirical inquiry into consumer involvement in health research. The paper discusses definitions of 'the consumer'; considers why consumer involvement is believed to be important to health research; traces the development of the policy; analyses the epistemological and methodological implications of the policy; discusses the various levels of consumer involvement in research; and outlines the objections to the policy that have been put forward by clinicians and researchers. Four questions were identified during the review as being in need of theoretical and empirical attention: (1) how can consumer involvement in health research be further conceptualised? (2) how and why does consumer involvement influence health research? (3) how can the influence of consumers in health research be measured and evaluated? and (4) what factors are associated with 'successful' consumer involvement in health research?
          Article 0 comments Cited 110 times – based on 0 reviews     Review now
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            Public involvement at the design stage of primary health research: a narrative review of case examples.

            Jonathan Boote, Wendy Baird, Claire Beecroft (2010)
            To review published examples of public involvement in research design, to synthesise the contributions made by members of the public, as well as the identified barriers, tensions and facilitating strategies. Systematic literature search and narrative review. Seven papers were identified covering the following topics: breast-feeding, antiretroviral and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural therapy; hormone replacement therapy and breast cancer; stroke; and parents' experiences of having a pre-term baby. Six papers reported public involvement in the development of a clinical trial, while one reported public involvement in the development of a mixed methods study. Group meetings were the most common method of public involvement. Contributions that members of the public made to research design were: review of consent procedures and patient information sheets; outcome suggestions; review of acceptability of data collection procedures; and recommendations on the timing of potential participants into the study and the timing of follow-up. Numerous barriers, tensions and facilitating strategies were identified. The issues raised here should assist researchers in developing research proposals with members of the public. Substantive and methodological directions for further research on the impact of public involvement in research design are set out. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.
            Article 0 comments Cited 107 times – based on 0 reviews     Review now
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              Health researchers' attitudes towards public involvement in health research.

              Jill Thompson, Rosemary Barber, Paul Ward … (2009)
              To investigate health researchers' attitudes to involving the public in research. Public involvement in research is encouraged by the Department of Health in the UK. Despite this, the number of health researchers actively involving the public in research appears to be limited. There is little research specifically addressing the attitudes of health researchers towards involving the public: how they interpret the policy, what motivates and de-motivates them and what their experiences have been to date. A qualitative research design, using semi-structured telephone interviews. Fifteen purposively sampled UK-based University health researchers were the participants. Interviews were conducted over the telephone. The participants suggested varying constructions of public involvement in research. Arguments based on moral and political principles and consequentialist arguments for involving the public in research were offered and most participants highlighted the potential benefits of involving the public. However, feelings of apprehension expressed by some participants imply that a number of researchers may still be uncomfortable with involving the public, as it presents a different way of working.
              Article 0 comments Cited 89 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Journal ID (nlm-ta): Health Expect
                Journal ID (iso-abbrev): Health Expect
                Journal ID (doi): 10.1111/(ISSN)1369-7625
                Journal ID (publisher-id): HEX
                Title: Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                Publisher: John Wiley and Sons Inc. (Hoboken )
                ISSN (Print): 1369-6513
                ISSN (Electronic): 1369-7625
                Publication date (Electronic): 10 December 2013
                Publication date (Print): October 2015
                Volume: 18
                Issue: 5 ( doiID: 10.1111/hex.2015.18.issue-5 )
                Pages: 661-675
                Affiliations
                [ 1 ]Mood Disorders Centre PsychologyUniversity of Exeter ExeterUK
                [ 2 ] Institute of Health ResearchUniversity of Exeter Medical School ExeterUK
                [ 3 ] Division of Health ResearchFaculty of Health and Medicine Lancaster University LancasterUK
                [ 4 ] Public Health and PolicyInstitute of Psychology, Health & Society University of Liverpool LiverpoolUK
                [ 5 ]Lancashire Care NHS Foundation Trust Mental Health Research Network North West Hub PrestonUK
                Author notes
                [*] [* ] Correspondence

                Dr Felix Gradinger

                Research Fellow

                Mood Disorders Centre

                Psychology (College of Life & Environmental Sciences)

                Washington Singer Laboratories

                University of Exeter

                EXETER EX4 4QQ

                UK

                E‐Mail: F.P.Gradinger@ 123456exeter.ac.uk

                Article
                Publisher ID: HEX12158
                DOI: 10.1111/hex.12158
                PMC ID: 5060838
                PubMed ID: 24325553
                SO-VID: f01eeeb1-e7f3-4f9b-8b35-ec6d1d3abeeb
                Copyright © © 2013 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
                License:

                This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                Date accepted : 28 October 2013
                Page count
                Pages: 15
                Funding
                Funded by: Medical Research Council's Methodology Research Programme
                Award ID: G0902155/93948
                Categories
                Subject: Review Article
                Subject: Review Articles
                Custom metadata
                source-schema-version-number 2.0
                component-id hex12158
                cover-date October 2015
                details-of-publishers-convertor Converter:WILEY_ML3GV2_TO_NLMPMC version:4.9.4 mode:remove_FC converted:06.10.2016

                ScienceOpen disciplines: Health & Social care
                Keywords: engagement,impact,involvement,participation,values
                Data availability:
                ScienceOpen disciplines: Health & Social care
                Keywords: engagement, impact, involvement, participation, values

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