• 1
    Involve. Colliding Worlds – report of the experiences service user involvement in research, 2004. Available at:, accessed 10 June 2009.
  • 2
    Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: advantages for health research. British Medical Journal, 1998; 316: 463466.
  • 3
    Chalmers I. What do I want from health research and researchers when I am a patient?. British Medical Journal, 1995; 310: 13151318.
  • 4
    Oliver S. How can health service users contribute to the NHS research and development agenda?. British Medical Journal, 1995; 310: 13181320.
  • 5
    Goodare H, Smith R. The rights of patients in research. British Medical Journal, 1995; 310: 12771278.
  • 6
    Staniszewska S, Jones N, Marshall S, Newburn M. User involvement in the development of a research bid: barriers, enablers and impacts. Health Expectations, 2007; 10: 173183. (1369–6513).
  • 7
    Department of Health. Local Government and Public Involvement Act 2007. Available at:, accessed 1 June 2009.
  • 8
    Hanley B, Truesdale A, King A, Elbourne D, Chalmers I. Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey. British Medical Journal, 2001; 322: 519523.
  • 9
    Dixon P, Peart E, Carr-Hill R. A Database of Examples of Consumer Involvement in Research. York: The University of York Centre for Health Economics, 1999.
  • 10
    Telford R, Beverley CA, Cooper CL, Boote JD. Consumer involvement in health research: fact or fiction? British Journal of Clinical Governance, 2002; 7: 92103.
  • 11
    Blaxter M. Consumer Issues Within the NHS: An R & D Contribution to Consumer Involvement in the NHS. London: Department of Health, 1995.
  • 12
    Oliver S, Buchanan P. Examples of lay involvement in research and development. EPI-centre, Social Science Research Unit, London University Institute of Education, 1997.
  • 13
    Abelson J, Giacomini M, Lehoux P, Gauvin F. Bringing ‘the public’ into health technology assessment and coverage policy decisions: from principles to practice. Health Policy, 2007; 82: 3750.
  • 14
    Hubbard G, Kidd L, Donaghy E, McDonald C, Kearney N. A review of literature about involving people affected by cancer in research, policy and planning and practice. Patient Education and Counseling, 2007; 65: 2133.
  • 15
    Smith E, Ross F, Donovan S et al. Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice. International Journal of Nursing Studies, 2008; 45: 298315.
  • 16
    Gilbert T. Involving people with learning disabilities in research: issues and possibilities. Health & Social Care in the Community, 2004; 12: 298308.
  • 17
    Viswanathan M, Ammerman A, Eng E et al. Community-based participatory research: Assessing the evidence. Evidence Report/Technology Assessment (Summary), 2004; 99: 18.
  • 18
    Staley K. Exploring Impact: Public involvement in NHS, Public Health and Social Care Research. Available at:, accessed 1 October 2009.
  • 19
    Brett J, Staniszewska S, Mockford C, Seers K, Herron Marx S, Bayliss H. Systematic Review of the Conceptualization, Measurement, Impact and Outcomes of Patient and Public Involvement in Health and Social Care Research. London: UKCRC, 2010.
  • 20
    Centre for Dissemination and Reviews (CRD). Systematic Reviews: CRD's Guidance for Undertaking Reviews in Health Care. York: Centre for Dissemination and Reviews (CRD), 2009.
  • 21
    Critical Appraisal Skill Programme. Available at:, accessed 1 April 2009.
  • 22
    Dixon-Woods M, Kirk D, Agarwal S et al. Vulnerable Groups and Access, to Health Care: A Critical Interpretative Review. London: National Co-ordinating Centre for NHS Service, 2005.
  • 23
    Popay J, Roberts H, Sowden A et al. Developing guidance on conduct of narrative synthesis in systematic reviews. Journal of Epidemiology and Community Health, 2005; 59 (suppl 11): A7.
  • 24
    Royle J, Oliver S. Consumer involvement in the health technology assessment program. International Journal of Technology Assessment in Health Care, 2004; 20: 493497.
  • 25
    Reed J, Weiner R, Cook G. Partnership research with older people – moving towards making the rhetoric a reality. Journal of Clinical Nursing, 2004; 13: 310.
  • 26
    Cashman SB, Adeky S, Allen AJ III et al. The power and the promise: working with communities to analyze data, interpret findings, and get to outcomes. American Journal of Public Health, 2008; 98: 14071417.
  • 27
    Trivedi P, Wykes T. From passive subjects to equal partners: qualitative review of user involvement in research. British Journal of Psychiatry, 2002; 181: 468472.
  • 28
    Minogue V, Boness J, Brown A, Girdlestone J. The impact of service user involvement in research. International Journal of Health Care Quality Assurance, 2005; 18: 103112.
  • 29
    Hewlett S, de Wit M, Richards P et al. Patients and professionals as research partners: challenges, practicalities and benefits. Arthritis & Rheumatism, 2006; 55: 676680.
  • 30
    Menon D, Stafinski T. Engaging the public in priority-setting for health technology assessment: findings from a citizens' jury. Health Expectations, 2008; 11: 282293.
  • 31
    Savage C, Xu Y, Lee R, Rose B, Kappesser M, Anthony J. A case study in the use of community-based participatory research in public health nursing. Public Health Nursing, 2006; 23: 472478.
  • 32
    Minkler M, Fadem P, Perry M, Blum K, Moore L, Rogers J. Ethical dilemmas in participatory action research: a case study from the disability community. Health Education & Behavior, 2002; 29: 1429.
  • 33
    Godfrey M. More than ‘involvement’: how commissioning user interviewers in the research process begins to change the balance of power. Practice, 2004; 16: 223231.
  • 34
    Oliver S, Armes D, Gyte G. Evaluation of public influence on the NHS Health Technology Assessment Programme. Social Science Research Unit, University of London, 2006.
  • 35
    UKCRC & TwoCan Associates. An Evaluation of the Process and Impact of Patient and Public Involvement in the Advisory Groups of the UK Clinical Research Collaboration. London: UK Clinical Research Collaboration, 2009.
  • 36
    Faulkner A. Beyond our Expectations: A Report of the Experiences of Involving Service Users in Forensic Mental Health Research. London: National Programme on Forensic Mental Health R&D, Department of Health, 2006.
  • 37
    Sainsbury Centre for Mental Health. A Review of Service User Involvement in Prison Mental Health Research. London: Sainsbury Centre for Mental Health, 2008.
  • 38
    Lindenmeyer A, Hearnshaw H, Sturt J, Ormerod R, Aitchison G. Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study. Health Expectations, 2007; 10: 268277.
  • 39
    Shah SG, Robinson I. Benefits of and barriers to involving users in medical device technology development and evaluation. International Journal of Technology Assessment in Health Care, 2007; 23: 131137.
  • 40
    Howe A, MacDonald H, Barrett B, Little B. Ensuring public and patient participation in research: a case study in infrastructure development in one UK Research and Development consortium. Primary Health Care Research and Development, 2006; 7: 6067.
  • 41
    Nilsen E, Myrhaug H, Johansen M, Oliver S, Oxman A. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database of Systematic Reviews, 2006; 3: 131.
  • 42
    Abma T. Patient participation in health research: research with and for people with spinal cord injuries. Qualitative Health Research, 2005; 15: 13101328.
  • 43
    Caron-Flinterman JF, Broerse JEW, Teerling J, Bunders JFG. Patients' priorities concerning health research: the case of asthma and COPD research in the Netherlands. Health Expectations, 2005; 8: 253263.
  • 44
    O'Donnell M, Entwistle V. Consumer involvement in decisions about what health-related research is funded. Health Policy, 2004; 70: 281290.
  • 45
    Rhodes P, Nocon A, Booth M et al. A service users' research advisory group from the perspectives of both service users and researchers. Health & Social Care in the Community, 2002; 10: 402409.
  • 46
    Kelson M. National Sentinel Audits Involving Older People: A Guide to Involving Older People in Local Audit Activity. London: College of Health, 1999.
  • 47
    Hailey D, Nordwall M. Survey on the involvement of consumers in health technology assessment programs. International Journal of Technology Assessment in Health Care, 2006; 22: 497499.
  • 48
    McCormick S, Brody J, Brown P, Polk R. Public involvement in breast cancer research: ananalysis and model for future research.International Journal of Health Services: Planning, Administration, Evaluation, 2004; 34: 625646.
  • 49
    Morgan L, Chambers R, Banerji J, Gater J, Jordan J. Consumers leading public consultation: the general public‟s knowledge of stroke. Family Practice, 2005; 22: 814.
  • 50
    Rowe A. The effect of involvement in participatory research on parent researchers in a Sure Start programme. Health & Social Care in the Community, 2006; 14: 465473.
  • 51
    Barnard A, Carter M, Britten N, Purtell R, Wyatt K, Ellis A. The PC11 Report. An evaluation of consumer involvement in the London Primary Care Studies Programme. Peninsula Medical School, Exeter, UK, 2005.
  • 52
    Clark M, Glasby J, Lester H. Cases for change: user involvement in mental health services and research. Research Policy and Planning, 2004; 22: 3138.
  • 53
    Caron-Flinterman JF, Broerse JEW, Teerling J et al. Stakeholder participation in health research agenda setting: the case of asthma and COPD research in the Netherlands. Science and Public Policy, 2006; 33: 291304.
  • 54
    Kelson M. User involvement in clinicalaudit: a review of developments and issues of good practice. Journal of Evaluation in Clinical Practice, 1996; 2: 97109.
  • 55
    Burrus BB, Liburd LC, Burroughs A. Maximizing participation by black Americans in population-based diabetes research: the Project DIRECT pilot experience. Journal of Community Health, 1998; 23: 1527.
  • 56
    Gooberman-Hill R, Horwood J, Calnan M. Citizens' juries in planning research priorities: process, engagement and outcome. Health Expectations, 2008; 11: 272281.
  • 57
    Wyatt K, Carter M, Mahtani V, Barnard A, Hawton A, Britten N. The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme. Family Practice, 2008; 25: 154161.
  • 58
    Langston AL, McCallum M, Campbell MK, Robertson C, Ralston SH. An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial. Clinical Trials, 2005; 2: 8087.
  • 59
    Marsden J, Bradburn J. Patient and clinician collaboration in the design of a national randomized breast cancer trial. Health Expectations, 2004; 7: 617.
  • 60
    Dickson G, Green KL. Participatory action research: lessons learned with Aboriginal grandmothers.Health Care for Women International, 2001; 22: 471482.
  • 61
    Andejeski Y, Bisceglio IT, Dickersin K et al. Quantitative impact of including consumers in the scientific review of breast cancer research proposals. Journal of Women's Health & Gender-Based Medicine, 2002; 11: 379388.
  • 62
    Corneli AL, Piwoz EG, Bentley ME et al. UNC Project BAN Study Team. Involving communities in the design of clinical trial protocols: the BAN Study in Lilongwe, Malawi. Contemporary Clinical Trials, 2007; 28: 5967.
  • 63
    Ali KFC, Crome P. What patients want: consumer involvement in the design of a randomised controlled trial of routine oxygen supplementation after acute stroke. Stroke, 2006; 37: 865871.
  • 64
    Griffiths KM, Jorm AF, Christensen H. Academic consumer researchers: a bridge between consumers and researchers. Australian & New Zealand Journal of Psychiatry, 2004; 38: 191196.
  • 65
    Truman C, Raine P. Involving users in evaluation: the social relations of user participation in health research. Critical Public Health, 2001; 11: 215229.
  • 66
    Paterson C. ‘Take small steps to go a long way’ consumer involvement in research into complementary and alternative therapies. Complementary Therapies in Nursing Midwifery, 2004; 10: 150161.
  • 67
    Coupland H, Maher L, Enriquez J et al. Funding community-based participatory research: lessons learned. Journal of Interprofessional Care, 2004; 18: 428439.
  • 68
    Plumb M, Price W, Kavanaugh-Lynch M. Funding community-based participatory research: lessons learned. Journal of Interprofessional Care, 2004; 18: 428439.
  • 69
    Dobbs L, Moore C. Engaging communities in area-based regeneration: the role of participatory evaluation. Policy Studies, 2002; 23: 157171.
  • 70
    Angell K, Kreshka M, McCoy R et al. Psychosocial intervention for rural women with breast cancer: the Sierra-Stanford Partnership. Journal of General Internal Medicine, 2003; 18: 499507.
  • 71
    Meyer M, Torres S, Cermeno N, MacLean L, Monzon R. Immigrant women implementing participatory research in health promotion. Western Journal of Nursing Research, 2003; 25: 815834.
  • 72
    Elliott E, Watson A, Harries U. Harnessing expertise: involving peer interviewers in qualitative research with hard-to-reach populations. Health Expectations, 2002; 5: 172178.
  • 73
    Wright D, Corner J, Hopkinson J, Foster C. Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda. Health Expectations, 2006; 9: 312.
  • 74
    Lucock M, Mirza M, Sharma I. Service users' views of a self help pack for anxiety. Journal of Mental Health, 2007; 16: 635646.
  • 75
    Ross F, Donovan S, Brearly S et al. Involving older people in research-methodological issues. Health Social Care Community, 2005; 13: 268275.
  • 76
    Rose D. Telling different stories: user involvement in mental health research. Research and Policy Planning, 2004; 22: 2330.
  • 77
    Philpot M, Collins C, Trivedi P, Treloar A, Gallacher S, Rose D. Eliciting users‟ views of ECT in two mental health trusts with a user-designed questionnaire. Journal of Mental health, 2004; 1394: 403413.
  • 78
    Andejeski Y, Breslau ES, Hart E et al. Benefits and drawbacks of including consumer reviewers in the scientific merit review of breast cancer research. Journal of Women's Health & Gender-Based Medicine, 2002; 11: 119136.
  • 79
    Ong BN, Hooper H. Involving users in low back pain research. Health Expectations, 2003; 6: 332341.
  • 80
    Cornes M, Peardon J, Manthorpe J. Wise owls and professors: the role of older researchers in the review of the National Service Framework for Older People. Health Expectations, 2008; 11: 409417.
  • 81
    Guarino P, Elbourne D, Carpenter J, Peduzzi P. Consumer involvement in consent document development: a multicenter cluster randomized trial to assess study participants' understanding. Clinical Trials, 2006; 3: 17407745.
  • 82
    Chambers R, O'Brien LM, Linnell S, Sharp S. Why don't health researchers report consumer involvement? Quality in Primary Care, 2004; 12: 151157.
  • 83
    Shea B, Santesso N, Qualman A et al. Cochrane Musculoskeletal Consumer GroupConsumer-driven health care: building partnerships in research. Health Expectations, 2005; 8: 352359.
  • 84
    Sutton J, Weiss M. Involving patients as advisers in pharmacy practice research: what are the benefits? International Journal of Pharmacy Practice, 2008; 16: 231238.
  • 85
    Mockford C, Staniszewska S, Griffiths F, Herron Marx S. The Impact of Patient and Public Involvement in the UK NHS Healthcare Service: A Systematic Review. Coventry: NHS Centre for Involvement, 2009.
  • 86
    Faulkner A. Capturing the Experiences of those Involved in the TRUE Project. A Story of Colliding Worlds. Eastleigh: Involve, 2004.
  • 87
    Staniszewska S, Brett J, Mockford C, Barber R. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. International Journal of Health Technology Assessment, 2012; 27: 391399.