Public Involvement in Health Research

Theme leaders:

Rosemary Barber

Jonathan Boote

There is recognition nationally and internationally of the importance of public involvement in health and social research, and it is UK Department of Health policy for the public to be involved in NHS, social care and public health research. Current guidance on research governance states, for example, that public involvement should exist at every stage of research where appropriate. By being expert witness to their own illness or health condition, it is argued that members of the public are well placed to improve both the quality and relevance of health research that is undertaken.

A research programme on the topic of public involvement in health and social research is focused around the following questions:

  • What is the impact of public involvement on different research processes and outcomes, different subject areas within health research, and research using different methods? And how should we best measure impact?
  • What does it mean to involve the public successfully in health research?
  • What are the attitudes of key stakeholders to public involvement in health research?

Published work on public involvement in health research, by the theme leads, is detailed below, grouped into the three main areas of enquiry on which the research programme is focused.

Published papers on public involvement in health research and its impact

Thompson J, Bissell P, Cooper L, Armitgage C, Barber R (2014).  Exploring the impact of patient and public involvement in a cancer setting.  Qualitative Health Research, January vol. 24, no. 1 46-54.

Boote J, Twiddy M, Baird W, Birks Y, Clarke C, Beever D (2013).  Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS).  Health Expectations.  Early View (online version). DOI:10.1111/hex.12130.

Boote J, Baird W, Sutton A (2012).  Involving the public in systematic reviews: a narrative review of organisational approaches and eight case examples.  Journal of Comparative Effectiveness Research, 1(5), 409-420.

Boote J, Wong R, Booth A (2012).  "Talking the talk or walking the walk?"  A bibliometric review of the literature on public involvement in health research published between 1995 and 2009.  Health Expectations, DOI: 10.1111/HEX.12007

Boote J, Dalgleish M, Freeman J, Jones Z, Miles M, Rodgers H (2012)  "But is it a question worth asking?"  A reflective case study describing how public involvement can lead to researchers' ideas being abandoned.  Health Expectations, DOI: 10.1111/j.1369-7625.2012.00771x

Thompson J, Bissell P, Cooper C L, Armitage C J, Barber R (2012).  'Credibility and the 'professionalized' lay expert: reflections on the dilemmas and opportunities of public involvement in health research'  Health (London) November 2012, vol. 16, no. 6 602-618.

Barber R, Beresford P, Boote J, Cooper C, Faulkner A.  Evaluating the impact of public involvement on research: a prospective case study.  International Journal of Consumer Studies 2011, 35: 609-615.

Barber R, Boote J, Parry G, Cooper C, Yeeles P.  Evaluating the impact of public involvement on research.  In:  Barnes M, Cottrell P (eds), Critical Perspectives on User Involvement.  Bristol: Policy Press 2012.

Staniszewska S, Barber R, Beresford P, Brady L M, Brett J, Elliot J, Evans D, Haywood K L, Jones D, Mockford C, Nettle M, Rose D, Walliamson T.  Developing the evidence base of patient and public involvement in research: the case for measuring impact.  International Journal of Consumer Studies 2011, 35: 628-632.

Barber R, Boote J , Parry G, Cooper C, Yeeles P, Cook S (2011), Can the impact of public involvement on research be evaluated? A mixed methods study. Health Expectations, 15: 229-241.

Boote J, Baird W, Sutton A (2011), Public involvement in the design and conduct of clinical trials: a review. The International Journal of Interdisciplinary Social Sciences, manuscript accepted for publication.

Boote J, Baird W, Beecroft C (2010), Public involvement at the design stage of primary health research: a narrative review of case examples. Health Policy, 95, 10-23.

Boote J, Telford R, Cooper C (2002) Consumer involvement in health research: a review and research agenda. Health Policy 61(2), 213-236.

Lucock M, Barber R, Jones A, Lovell, J & Barczi M. (2007) Service users┬┤ views of self help strategies and research in the UK. Journal of Mental Health, 16 (6): 795-805.

Telford R, Beverley C, Cooper C, Boote J (2002) Consumer involvement in health research: fact or fiction? Clinical Governance: An International Journal, 7(2), 92-103.

Telford R, Faulkner A (2004) Learning about service user involvement in mental health research. Journal of Mental Health, 13(6), 549-559.

Published papers on defining and measuring successful public involvement in health research

Staniszewska S, Brett J, Monkford C, Barber R.  (2011)The GRIPP Checklist: Strengthening the quality of patient and public involvement in research.  International Journal of Technology Assessment in Health Care 27(4): 391-399.

Boote J, Barber R, Cooper C (2006) Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and subgroup analysis. Health Policy, 75 (3), 280-297.

Telford R, Boote J, Cooper C (2004) What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expectations, 7(3), 209-220.

Published papers on the attitudes of stakeholders to public involvement in health research

Thompson J, Ward P, Barber, R, Boote J, Armitage C, Cooper C, Jones G (2009), Health researchers┬┤ attitudes towards public involvement in health research. Health Expectations, 12(2), 209-220.

Ward PR, Thompson J, Barber R, Armitage CJ, Boote JD, Cooper CL, Jones GL (2010), Critical perspectives on 'consumer involvement' in health research: epistemological dissonance and the know-do gap. Journal of Sociology, 46, 63-82.