Public involvement in health research

Theme leader: Rosemary Barber

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.

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Ongoing projects

External evaluation of PPI in the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre

The Greater Manchester Primary Care Patient Safety Translational Research Centre is funded by the National Institute for Health Research for five years (£6,291,208 from August 2012) and works on behalf of Salford Royal NHS Foundation Trust, in partnership with The University of Manchester.  The Centre has a strong PPI and engagement agenda, with approximately 8% of the Centre budget devoted to PPI and public engagement.  The University of Sheffield has been commissioned to undertake an external evaluation of PPI within the work of the Centre, focusing primarily on the impact of the Centre's main PPI group, known as the Research User Group.  Evaluation methods include non-participant observation at Research User Group meetings, documentary analysis and yearly stakeholder interviews.

Improving Quality and Effectiveness of Service Therapies and Self-management on longer term depression (IQuESTS)

This project aims to improve the quality and effectiveness of service therapies and self-management of long-term depression by integrating research evidence and information from people with experience of managing long term depression using a systematic approach which includes mathematical decision modelling. Service user researchers are members of the research team, and have jointly developed the bid and the research protocol. The project has three work packages: 1. System modelling of care pathway in relation to self-management; 2. Understanding self-management by learning from the service user; 3. Testing system improvements. The project is led by Professor Glenys Parry with funding from the National Institute for Health Research (NIHR) South Yorkshire Collaboration For Leadership in Applied Health Research and Care (CLAHRC).

What aspects of psychological therapy are acceptable and not acceptable to people with severe and complex mental health problems?

Funding was awarded to carry out research to identify aspects of psychological therapies that are helpful and unhelpful to people with severe and complex mental health problems. Findings from this study will assist in improving mental health services by making them more relevant to those who use them. Service user involvement has been important at every stage of this project, particularly when interviewing service users, analysing and interpreting the data. This study is part of a larger randomised controlled trial led by Professor Glenys Parry: Sheffield Personality Disorder Trial (SPeDI).

Can the impact of public involvement in health and social research be evaluated? An international Delphi study

Little is known about the impact of public involvement on health and social research. The absence of a body of literature to guide us raises questions about whether it is feasible to evaluate the impact. Do we have appropriate methods? Can it be done? We carried out a Delphi study to see if consensus could be reached on whether the impact of public involvement on health and social research could be evaluated using any research method. The study also addressed ethical and moral issues relating to public involvement. We invited the following people, self-selected as having knowledge and/or experience of public involvement in research, to take part: members of the public who had been actively involved in research; researchers; research managers; research commissioners and funders; and policy makers and policy analysts.

User involvement in the DAFNE research programme: an evaluation of training and impact

An NIHR-funded programme grant entitled `Improving management of Type 1 diabetes in the UK: the DAFNE programme as a research test-bed´ is currently underway (Chief Investigator, Prof Simon Heller; grant ref: RP-PG-0606-1184; end date, 30/9/12). User involvement is embedded within the entire DAFNE research programme. Members of the DAFNE Users Action Group (DUAG) sit on key DAFNE research committees such as the Researchers Group and the Database Group, to provide a DAFNE user perspective on all aspects of the research programme. Recognising the need to provide training and support to users involved in the programme, an introductory training programme on research methods has been provided, by Sheffield University, to DUAG members. A longitudinal mixed-methods evaluation of the training provided to DUAG members, and the impact that DUAG members are having on the DAFNE research programme, is currently ongoing. The evaluation has three components:

• Analysis of all DAFNE research documents concerning user involvement. This will include minutes of meetings where users have been present, and protocols and other research-specific documents written with the input of users.
• Interviews and/or focus groups with key informants. This will include DUAG members, DAFNE researchers and Executive Group members.
• Non-participant observation at DAFNE research meetings where users are present.

Public involvement in health and social care research: a bibliometric overview of the literature

Based on a comprehensive bibliography of references on public involvement in health and social care research, a bibliometric analysis of peer-reviewed journal articles is underway. This study aims to classify the literature based on an agreed coding framework, and to identify the most heavily cited papers and key publishing trends in the field.

Reviews of the evidence base

It is important to evaluate the impact of public involvement in health research in different contexts and different stages of the research cycle. An ongoing programme of reviews of the evidence base addresses this significant issue. Recent published reviews of the literature have included a review of public involvement at the design stage of primary health research, a review of public involvement in mental health research, and a review of public involvement in the design and conduct of clinical trials. The team is currently working on a review of public involvement in the design and conduct of systematic reviews.

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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.