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Cited by 21Mental Health and Patient InvolvementCommunity Health and DevelopmentEthics in Clinical Research

Public involvement in health research: a case study of one NHS project over 5 years

Open access
Howe, Amanda, Delaney, Sarah, Romero, Jacqueline, Tinsley, Adele, Vicary, Penny·2010·Primary Health Care Research & Development
DOI 10.1017/s1463423609990405
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Abstract

Background Public involvement, both in the National Health Service (NHS) and in clinical research, is promoted as an important democratic principle. The declared aims are to reduce professional autocracy and allow a broader ownership of the research agenda; also to improve the design of, and recruitment and retention of patients to, clinical studies. There have been a number of national initiatives in the UK to improve public input to clinical research activities, but very few reports of effective and sustainable partnerships over time. This study reports the evaluation of one example, which is embedded in the NHS and university partnerships in the Norfolk area of England. Objectives Evaluate: • Putting principles into practice of public involvement in research over a 5 year period for one specific project (Patient and Public Involvement in Research). • How the model contributes to, and impacts upon, all stages of the research process. • Attitudes of the research community and lay volunteers to their mutual experiences of public involvement. • Key factors and strengths of this project, and areas for improvement. Methods A mixed methods approach related to the 5 years from start of 2003 to end of 2007. This used descriptive statistics of volunteer activity, interviews with key stakeholders (13), questionnaires (53% response rate), and focus group with 10 volunteers to explore emergent themes. We analysed findings using a policy framework approach. Results About 47 of the original 55 volunteers remained on the panel after 5 years. All have undertaken training, 38% have been involved in the full range of research activities offered, and 75% have attended at least one research project meeting. Some are active in governance, ethics, and advisory committees. Both the research community and the volunteers are very positive about the project. The researchers find it provides well prepared personnel, and gives a speedy and efficient way of fulfilling the expectations of funders for lay input. The volunteers find it gives them important opportunities to influence the quality of research and thus support improvements in patient care. Areas for improvement include increasing social diversity among the volunteers, and improving feedback on input from volunteers, without which volunteers tend to lose confidence and motivation. Conclusion Long-term sustainable and valuable public input to research is possible. Key factors are committing resources, embedding the service in the infrastructure of a research consortium, and ongoing responsiveness by NHS staff and researchers. Additional activity to recruit and support access may be needed to attract people from a broad range of sociodemographic backgrounds. Some volunteers want more involvement than this model currently offers.

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  • The evidence on PPI impact tends to be descriptive, largely qualitative, often retrospective case studies, with only a few exceptional prospective longitudinal case studies, comparative multiproject evaluations or studies employing quantitative designs.

    “What evidence there is tends to be descriptive, largely qualitative, often retrospective case studies, 19,29,106 with only a few exceptional prospective longitudinal case studies, 15 comparative multiproject evaluations 107 or studies employing quantitative designs.108”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [15]

  • Because PPI in research is not an entirely new innovation, intervention, programme or phenomenon, but also is not yet fully normalised within contemporary research practice, it has been suggested that NPT offers unique potential for helping theorise how PPI is/is not routinely operationalised and sustained in practice.

    “Because PPI in research is not an entirely 'new' innovation, intervention, programme or phenomenon, but also is not yet fully normalised within contemporary research practice, it has been suggested 15 that NPT offers unique potential for helping theorise how PPI is/is not routinely operationalised (embedded) and sustained (or not) in practice.”

    From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [15]

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Research works printed but not linked: 3

  1. Cooper, C. , Barber, R. , Parry, G. Boote, J. 2008: Report of an Expert Workshop on the Impacts of Public Involvement in Health and Social Care Research. ScHaRR, University of Sheffield. Retrieved 15 October 2008 from http://www.shsrc.nhs.uk/Documentsforweb/ConConf/2007%20Conf/Presentation/C716%20-%20Expert%20Workshop%20on.ppt
  2. Arnstein, 1969, A ladder of participation, Journal Royal Town Planning Institute, 57, 176
  3. 2006, Best research for best health: a new national health research strategy

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Authors
Howe, A., Delaney, S., Romero, J., Tinsley, A., & Vicary, P.
Affiliations
  • University of East Anglia (GB)
  • Graduates of the UEA MB/BS programme
  • NHS Norfolk Primary Care Trust
  • PPIRes (Patient and Public Involvement in Research) volunteer
Corresponding author
Howe, Amanda
ORCID
Venue
Primary Health Care Research & Development
Publisher
Cambridge University Press (CUP)
Published
2009-12-10
Volume
11
Issue
1
Pages
17-28
ISSN
  • 1463-4236 (ISSN-L)
  • 1477-1128
DOI
10.1017/s1463423609990405
OpenAlex
W2154145254
Cited by
21
References
15
Citations by year
2023: 1 · 2022: 2 · 2020: 1 · 2019: 1 · 2018: 3 · 2017: 1 · 2016: 2 · 2015: 2 · 2014: 2 · 2013: 3 · 2012: 2
FWCI
1.82
Type
journal article
Language
en
Open access
Licence
www.cambridge.org/core/terms (unspecified)
Locations
  • Primary Health Care Research & Development (publishedVersion)
  • UEA Digital Repository (University of East Anglia) (submittedVersion)
Funders
Royal College of General Practitioners
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 › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Keywords
public involvement in research, patient and public involvement, research governance, research ethics committees, volunteer retention, research recruitment and retention, Norfolk

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