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Cited by 72Mental Health and Patient InvolvementCommunity Health and DevelopmentHealth Policy Implementation Science

Consumer involvement in health research: a UK scoping and survey

Mathie, Elspeth, Wilson, Patricia, Poland, Fiona, McNeilly, Elaine, Howe, Amanda, Staniszewska, Sophie, Cowe, Marion, Munday, Diane +1 more·2014·International Journal of Consumer Studies
DOI 10.1111/ijcs.12072
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Abstract

Abstract Consumer involvement or patient and public involvement (PPI) in health research is a UK policy imperative and a prerequisite for many funders. PPI in research is defined as research carried out with or being carried out by the public (or service users), rather than research on patients and public as subjects or participants. Despite the clear policy driver, there is relatively little empirical evidence on the extent, processes and impact of user involvement in research. This paper aims to add to the international evidence base on PPI in research by providing a key overview of current trends and impacts. In order to understand the current extent and variation of PPI in research, a scoping exercise and survey were carried out on selected UK studies. Six research topic areas (cystic fibrosis, diabetes, arthritis, dementia, intellectual and developmental disabilities, and public health) were selected to ensure a range of designs, study populations and histories of PPI in research. A total of 838 studies (non‐commercial studies and not older than 2 years) were contacted. The response rate for the scoping was 38% and the survey 28%. In the scoping, 51% of studies had some evidence of PPI and in the survey 79%. The most common PPI activity was steering committee membership and reviewing patient information leaflets. There appeared to be some blurred roles with patients participating as research subjects as well as carrying out patient involvement roles. A major finding was the limited amount of available information about PPI in publicly accessible research documents. We suggest that the invisibility of this type of involvement and the lack of routinely collected information about PPI results in a lack of shared understanding of what optimal PPI in a study should look like, with important implications for practice. Furthermore, without a framework to review PPI it is difficult to know if different approaches to PPI have a different impact on key outcomes of the research.

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  • The disappointing response rate of 28% means that the results from the survey must be treated with caution.

    “Although within the normal parameters of an electronic survey, 158 the disappointing response rate of 28% means that the results from the survey must be treated with caution (see Chapter 8, Reflections on and limitations of the research).”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [158]

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Authors
Mathie, E., Wilson, P., Poland, F., McNeilly, E., Howe, A., Staniszewska, S., Cowe, M., Munday, D., & Goodman, C.
Affiliations
  • University of Hertfordshire (GB)
  • University of East Anglia (GB)
  • University of Warwick (GB)
Corresponding author
Mathie, Elspeth
ORCID
Venue
International Journal of Consumer Studies
Publisher
Wiley
Published
2014-01
Volume
38
Issue
1
Pages
35-44
ISSN
  • 1470-6423 (ISSN-L)
  • 1470-6431
DOI
10.1111/ijcs.12072
OpenAlex
W2153696721
Cited by
72
References
40
Citations by year
2026: 2 · 2025: 7 · 2024: 3 · 2023: 4 · 2022: 9 · 2021: 8 · 2020: 5 · 2019: 5 · 2018: 7 · 2017: 5 · 2016: 5 · 2015: 8 · 2014: 2 · 2013: 2
FWCI
12.04
Type
journal article
Language
en
Open access
closed
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor, 8 d)
Locations
  • International Journal of Consumer Studies (publishedVersion)
  • University of Hertfordshire Research Archive (University of Hertfordshire) (acceptedVersion)
  • Kent Academic Repository (University of Kent) (submittedVersion)
  • UEA Digital Repository (University of East Anglia) (submittedVersion)
  • University of Hertfordshire Research Archive (University of Hertfordshire) (submittedVersion)
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
patient and public involvement, patient information leaflets, research transparency, research impact, service user involvement

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