Patient and Public Involvement in Research: Suggested Introductory Reading List for Website

Patient and Public Involvement in Health and Social Care Research: A Bibliography

Compiled by Dr Jonathan Boote, Research Fellow,

NIHR Research Design Service for Yorkshire and the Humber

Last revised on 07/11/2011

INTRODUCTION AND SCOPE OF THE BIBLIOGRAPHY

This bibliography is intended to provide readers with a guide to the literature published in English on patient and public involvement (PPI) in health and social care research. INVOLVE, the body responsible for promoting patient and public involvement in research in England, defines ‘involvement’ as:

“an active partnership between the public and researchers in the research process, rather than the use of people as the ‘subjects’ of research. Active involvement may take the form of consultation, collaboration or user control. Many people define public involvement in research as doing research ‘with’ or ‘by’ the public, rather than ‘to’, ‘about’ or ‘for’ the public. This would include, for example, public involvement in advising on a research project, assisting in the design of a project, or in carrying out the research”.

This bibliography provides details on policy documents and guidance on patient and public involvement, as well book chapters, books and peer-reviewed papers on aspects of patient and public involvement in health and social care research. It should be noted that different terms are used for ‘patient and public’ in the literature: other terms used are ‘consumer, ‘user’, ‘service user’, ‘client’ ‘community’ and ‘lay’. The bibliography focuses exclusively on PPI in health and social care research. As such, papers that focus on PPI in service development and clinical audit have been excluded, as have papers that focus on issues relating to the involvement of people in research in areas other than health and social care.

The bibliography is divided into four parts: (1) policy documents, reports and guides; (2) book chapters; (3) books; and (4) peer-reviewed journal articles. Many of the reports featured in this bibliography can be downloaded from the Internet: where appropriate, therefore, hyperlinks have been provided. Peer-reviewed journal articles have been thematically subdivided into the following sections.

·  General introductory papers on PPI in health and social care research

·  PPI in identification of research questions and research prioritisation

·  PPI in research design and protocol development

·  PPI in peer review of research proposals and funding decisions

·  PPI in medical device/intervention development

·  Involvement of older people in health and social care research

·  Involvement of young people and parents in health and social care research

·  Involvement of people with learning difficulties in health and social care research

·  Involvement of people with mental health problems in health and social care research

·  Involvement of people with cancer in health and social care research

·  PPI in research advisory groups and other committees

·  PPI in data collection

·  PPI in analysing and interpreting data

·  PPI in secondary research and health technology assessment

·  Reflections on and examples of user-led health and social care research

·  Discussion papers on participatory research, action research or community-based methods in health and social care research

·  Health or social care research using participatory or action research methods, or community-based methods

Peer-reviewed journal articles are only listed once in this bibliography. As can be surmised from the above thematic list, there were occasions when a paper could have been placed in more than thematic category. The compiler’s judgement was used in allocating each paper to the theme thought most appropriate. Readers may disagree on occasions as to the thematic placing of a certain paper.

DATABASES INITIALLY SEARCHED AND SEARCH TERMS USED

A search was undertaken in January 2009 by Information Resources, School of Health and Related Research, University of Sheffield, of the following databases: PsycINFO, MEDLINE, CINAHL, EMBASE and the invoNET database. All articles published in English on the topic of PPI in research from 1995 to the present day were searched for. Search terms included ’consumer’, ‘user’, ‘participant’, involvement’, ‘inclusion’, and ‘research’. Papers were included on the basis of title and, where it was available, the abstract. It is possible therefore that, in the case of reports of primary research, papers may have been excluded from the bibliography when detail about the public involvement in the study was provided in the main text of the paper only, and where PPI was not apparent from the title, detail of authorship and/or the study abstract.

Note that the database search identified almost exclusively peer-reviewed journal articles only. Books, book chapters, reports and guidance documents have been identified through the compiler’s personal knowledge of the field. Therefore, there are likely to be omissions to the list of books, book chapters, reports and guidance documents as the bibliography currently stands.

A detailed consideration of the searches undertaken – by Claire Beecroft, Information Specialist – Research Support, School of Health and Related Research, University of Sheffield

Searching for papers on PPI in research is complicated by the fact that currently none of the major health databases have a subject heading to describe PPI specifically in the research process. Thus for this search the following strategies were used:

Medline/CINAHL - these databases both have a subject heading called ‘consumer participation’- this is used for papers on participation in research, but also in decision-making etc, so it retrieves many thousands of results. To improve the accuracy of the results, limits were applied to restrict to papers which also included the word stems ‘involv*’ or ‘research*’ in the title or abstract, were written in English, had an abstract and were published from 1995 to the present date.

EMBASE - this database does not have a specific subject heading for consumer participation, so instead the word stems ‘consumer*’ or ‘user*’ where searched in the title or abstract, combined with the subject heading ‘Medical Research’. Again, this search was limited to papers that had an abstract, were written in English and were published from 1995 to the present date.

PsycInfo - for this database, a search based entirely on free-text terms was used as no relevant subject headings were identified. In this case the strategy searched for papers featuring the word stems ‘consumer*’ OR ‘user*’ within one word of the word stems ‘participat*’ OR ‘involv*’ OR ‘inclus*’ in the title or abstract. Again, this search was limited to papers that were written in English, had an abstract and were published from 1995 to the present date.

POLICY DOCUMENTS, REPORTS AND GUIDES ON PPI IN HEALTH AND SOCIAL CARE RESEARCH

Association of Medical Research Charities (AMRC) (2006), Briefing Paper: Using lay reviewers in the peer review process. London: AMRC.

Avalere Health (2007), Patient and Clinician Participation in Research Agenda Setting:

Lessons for Future Application, Washington, DC: Avalere Health LLC. Online at

http://copr.nih.gov/media/pcrp_white.pdf (as of August 26, 2008).

Barnard A, Carter M, Britten N, Purtell R, Wyatt K, Ellis A. Summary of PC11 Report. An evaluation of consumer involvement in the London Primary Care Studies Programme. Peninsula Medical School. http://www.invo.org.uk/pdfs/Summary_of_PC11Report1.pdf

Bastian H, (1994), The Power of Sharing Knowledge: Consumer Participation in the Cochrane Collaboration.

http://consumers.cochrane.org/sites/consumers.cochrane.org/files/BastianPowerofSharingKnowledge_1994.pdf

Baxter L, Thorne L, Mitchell A (2001), Small Voices Big Noises: Lay Involvement in Health Research: Lessons from Other Fields. Washington Singer Press.

http://www.invo.org.uk/pdfs/small_voices.pdf

Blaxter M (1995), Consumers and research in the NHS: an R&D contribution to consumer involvement in the NHS. London: Department of Health.

Beer, D., Keeble, P., MacInnes, D., Rees, D. Reid, L (2005), Development of a questionnaire to measure service user satisfaction within in-patient forensic services - The Forensic Satisfaction Scale. Liverpool: National Programme on Forensic Mental Health R&D

Beresford P. (2003), It’s our lives: a short theory of knowledge, distance and experience. Citizen Press in association with Shaping Our Lives.

Blackburn H., Hanley B. and Staley K. (2010) Turning the pyramid upside down: examples of public involvement in social care research, INVOLVE, Eastleigh.

Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S, Bayliss H (2010). The PIRICOM Study: A systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research. UK Clinical Research Collaboration. http://www.ukcrc.org/index.aspx?o=3233

Brown V, Cotterell C, Sitzia J, Richardson A, Kelley K, Willers R (2006). Evaluation of Consumer Research Panels in Cancer Research Networks. Final Report. An independent evaluation commissioned by the National Cancer Research Network and Macmillan Cancer Support. http://www.sxrc.nhs.uk/NR/rdonlyres/164B4AA2-D4C0-4E38-8974-1553BD6E21D1/0/CRPvF20061122FullReport.pdf

Brownlie J, Anderson, S, Ormston (2006). Children as researchers. Edinburgh: Scottish Executive Education Department.

Bryant, L, Beckett, J (2006), The practicality and acceptability of an advocacy service in the emergency department for people attending following self-harm. Leeds: Academic Unit of Psychiatry, Leeds University.

http://www.leeds.ac.uk/hsphr/psychiatry/research/advocacy_service.htm

Carr S, Coren, E (2006), Collection of examples of service user and carer participation in systematic reviews. London: SCIE.

http://www.scie.org.uk/publications/researchresources/rr02.pdf

CIHR (2007), CIHR Guidelines for Health Research Involving Aboriginal People, Ottawa:

Canadian Institutes of Health Research. Online at http://www.cihrirsc.gc.ca/e/documents/ethics_aboriginal_guidelines_e.pdf (as of August 31, 2008).

Corner J, Wright D, Foster C, Gunaratnam Y, Hopkinson J, Okamoto I (2006), The Macmillan Listening Study: Listening to the views of people affected by cancer about cancer research. London: Macmillan Cancer Support.

Davies R, Evans D (2010), Public involvement in research: how can organisations collaborate to improve involvement? University of the West of England.

http://hls.uwe.ac.uk/suci/Data/Sites/1/public_involvement_in_research_report_april_2010_final..pdf

Deloitte (2009), Enhancing Consumer Involvement in Medicines Health Technology Assessment: Final Report. http://www.deloitte.com/assets/Dcom-Australia/Local%20Assets/Documents/Industries/Deloitte_Consumer%20Involvement%20in%20HTA%20Report.pdf

Dodson, J. and Baker, J. (1995) Time for Change - Local people becoming Researchers. London, Save the Children.

Faulkner, A. (2010) Changing our Worlds: Examples of user-controlled research in action. INVOLVE, Eastleigh.

Faulkner A. Beyond our expectations: A report of the experiences of involving service users in forensic mental health research.

http://www.invo.org.uk/invonetresources/Beyond%20our%20Expectations%20final.doc

Faulkner A (2004), Capturing the experiences of those involved in the TRUE project: A story of colliding worlds. Eastleigh: INVOLVE.

http://www.invo.org.uk/pdfs/Colliding%20Worlds.pdf

Faulkner A (2004), The Ethics of Survivor Research. Guidelines for the ethical conduct of research carried out by mental health service users and survivors. Bristol: The Policy Press.

Faulkner A, Morris, B. (2003), User involvement in forensic mental health research and development. http://www.nfmhp.org.uk/pdf/UserInvolvement.pdf

France, A. (2000) Youth Researching Youth: The triumph and Success peer research project, Leicester: National Youth Agency.

Gauvin FP (2008), Public Involvement in Health Technology Assessment Agencies: A Comparative Analysis of Canada, Denmark and the United Kingdom, PhD. McMaster University, Hamilton (Ontario, Canada).

Griffiths, K. M., H. Christensen, L. Barney, A. Jenkins, C. Kelly, and K. Pullen (2004), Promoting Consumer Participation in Mental Health Research: A National Workshop,

Canberra: Centre for Mental Health Research, The Australian National University. Online at http://www.ehub.anu.edu.au/pdf/consumerworkshopreport.pdf (as of August 1, 2008).

Hailey D (2005), Consumer involvement in health technology assessment. Edmonton: Alberta Heritage Foundation for Medical Research. HTA Initiative #21. http://www.ihe.ca/documents/HTA-FR21.pdf

Hanley, B. Research as empowerment? Report of a series of seminars organised by the Toronto Group York - The Homestead, 40 Water End, York YO30 6WP: Joseph Rowntree Foundation, 2005.

Harrison A. Getting the right medicines? Putting public interests at the heart of health-related research. London: King's Fund, 2003.

Hays and Kirby, P. (1998) Let's Spell it out: Peer Research on the Educational Support Needs of Young Refugees and Asylum Seekers living in Kensington and Chelsea. London: Save the Children.

Health Equality Europe (2008): A Guide to Understanding HTA for Patients and the Public. http://www.htai.org/index.php?id=85&type=0&jumpurl=fileadmin%2FHTAi_Files%2FISG%2FPatientInvolvement%2FEffectiveInvolvement%2FHEEGuideToHTAforPatientsEnglish.pdf&juSecure=1&locationData=85%3Att_content%3A690&juHash=2221bae128

Hovard L, Crowe S, Hussain N (2004) Effectiveness and Quality in User Involvement Projects (EQUIP) Final Report. NHS Public Health Resource Unit.

http://www.invo.org.uk/pdfs/EQUIP_Report.pdf

The HTAi Interest Group on Patient/Citizen Involvement (2009). Glossary for consumers and patients: a beginner’s guide to the words used in health technology assessment.

http://www.htai.org/index.php?id=85&type=0&jumpurl=fileadmin%2FHTAi_Files%2FISG%2FPatientInvolvement%2FGlossary%2FHTAiPatientAndConsumerGlossaryOctober2009_01.pdf&juSecure=1&locationData=85%3Att_content%3A981&juHash=1e8c0089e2

INVOLVE (2010) Payment for involvement: a guide to making payment to members of the public actively involved in NHS, public health and social care research. http://www.invo.org.uk/pdfs/PaymentGuideWEB240510.pdf

INVOLVE (2010) Examples of training and support for public involvement in research:

sharing innovative practice workshop. INVOLVE, Eastleigh.

INVOLVE (2009) Senior Investigators and Public Involvement, INVOLVE, Eastleigh.

http://www.invo.org.uk/pdfs/SIFINALPAPERNOV2009101109.pdf

INVOLVE (2007), Good practice in active public involvement in research. http://www.invo.org.uk/pdfs/GoodPracticeD3.pdf

INVOLVE (2004), Getting started with involving the public in health research: an information sheet for researchers.

http://www.invo.org.uk/pdfs/Informationsheet_on_involvement_in_public_health_research.pdf

INVOLVE (2004), Involving the public in NHS, public health, and social care research: Briefing Notes for Researchers.

http://www.invo.org.uk/pdfs/Briefing%20Note%20Final.dat.pdf

INVOLVE (2004), Full Consultation Document for Involving Marginalised and Vulnerable Groups in Research.

http://www.invo.org.uk/pdfs/Involving%20Marginalised%20and%20VullGroups%20in%20Researchver2.pdf

INVOLVE (2007) Public Involvement Pack – guidance for members of the public interested in getting involved in research:

Booklet 1 - so what is it all about? http://www.invo.org.uk/pdfs/PIP1whatisitallabout.pdf

Booklet 2 – getting started http://www.invo.org.uk/pdfs/PIP2gettingstarted.pdf

Booklet 3 – finding out more http://www.invo.org.uk/pdfs/PIP3findingoutmore.pdf

Booklet 4 – jargon buster - http://www.invo.org.uk/pdfs/PIP44jargonbuster.pdf

INVOLVE (2006), Getting involved in research grant applications; guidelines for members of the public. http://www.invo.org.uk/pdfs/P1grant_applications.pdf

INVOLVE (2006), Peer reviewing research proposals: guidelines for members of the public. http://www.invo.org.uk/pdfs/P2peer_review.pdf

INVOLVE (2006), Being a member of a commissioning board: guidelines for members of the public. http://www.invo.org.uk/pdfs/P3commissioning_board.pdf

INVOLVE (2006), Public involvement in research grant applications: guidelines for commissioners. http://www.invo.org.uk/pdfs/C1grantapplications.pdf

INVOLVE (2006), Public involvement in peer reviewing research proposals: guidelines for commissioners. http://www.invo.org.uk/pdfs/C2peerreview.pdf

INVOLVE (2006), Public involvement in commissioning boards: guidelines for commissioners. http://www.invo.org.uk/pdfs/C3commissioning_boards.pdf

INVOLVE (2006), Public involvement in research grant applications: guidelines for researchers. http://www.invo.org.uk/pdfs/R1research_grant_applications.pdf

INVOLVE. (2006), Guide to reimbursing and paying members of the public actively involved in research. http://www.invo.org.uk/pdfs/Payment_Guidefinal240806.pdf

INVOLVE (2004), Report of a seminar on training for public involvement in research. http://www.invo.org.uk/pdfs/Training%20forPublicInvolvement_%20in_%20Research_%20FINAL211204.pdf

Ismail S (2009), Participatory Health Research. International Observatory on Health Research Systems, RAND Corporation.

http://www.rand.org/content/dam/rand/pubs/technical_reports/2009/RAND_TR667.pdf

Kellett, M. (2005) ‘Children as active researchers: a new research paradigm for the 21st century?’ Published online by ESRC National Centre for Research Methods, NCRM/003 www.ncrm.ac.uk/publications