Introduction and scope of the bibliography

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BOOKS ON PPI IN HEALTH AND SOCIAL CARE RESEARCH

Barnes, C. and Mercer, G. (eds) 1997: Doing Disability Research, Leeds: The Disability Press.

Boyden, J. and Ennew, J., (Eds.) (1997) Children in focus: a manual for participatory research with children. Stockholm: Radda Barnen.
Caron-Flinterman F (2005), A new voice in science: patient participation in decision-making on biomedical research. Zutphen: Wohrmann Print Services.
Clark, J., Dyson, A., Meagher, N., Robson, E. and Wootten, M. (2001) Young People as Researchers: possibilities, problems and politics. Leicester: Youth Work Press.
Cropper S, Williams G, Moore RS (2007), Community Health and Wellbeing: Action Research on Health Inequalities. The Policy Press.
De Koning, K. and Martin, M. (Eds.) (1996) Participatory Research in Health: Issues and Experiences. Johannesburg: NPPHCN.
Earl-Slater A (2004), Lay involvement in health and other research. Radcliffe Medical Press.
Hart, E. and Bond, M. (1995) Action Research for Health and Social Care: A Guide to Practice. Buckingham: Open University Press.
Holland, J. and Blackburn, J., (Eds.) (1998) Whose Voice? Participatory Research and Policy Change. London: Intermediate Technology Publications.
Israel BA, Eng E, Schulz AJ, Parker EA (2005), Methods in Community-based Participatory Research for Health‎. Wiley.

Kellett, M. (March 2005) How to Develop Children as Researchers: a step by step guide to the research process, London: Sage.

Koch T, Kralik D, Van Loon A, Mann S (2006), Participatory Action Research in Health Care. Blackwell Publishing.

Littlejohns P and Rawlins M (eds.) (2009), Patients, the public and priorities in healthcare. Abingdon: Radcliffe Publishing Ltd.

Lowes L, Hulatt I (2005), Involving service users in health and social care research. Routledge.

Marshall A, Riecken T. (Eds.), Ethical issues in community-based research with children and youth (pp. 22–41). Toronto, Canada: University of Toronto Press.

McLaughlin H (2009) Service user research in health and social care. London: Sage.
McTaggart, R. (1997), Participatory Action Research: International Contexts and Consequences, New York: State University of New York Press.
Minkler M, Wallerstein N (2003), Community Based Participatory Research for Health‎. Jossey-Bass.
Morton-Cooper A (2000), Action research in healthcare. Blackwell Publishing.
Nolan, M, Hanson E, Grant, G. Keady J (Eds.), User participation in health and social care research. Berkshire: Open University Press.
Purtell, R., Baxter, L., & Mitchell, A. (2003). 'Doing Research Together' Users as Researchers in Health and Social Care. London, Venture Press.
Ramon S (2002), Users Researching Health and Social Care: An Empowering Innovation. Venture Press
Stringer ET, Genat W (2004), Action Research in Health. Merrill Prentice Hall.
Sweeney A, Beresdord P, Faulkner A, Nettle M, Rose D (eds.), (2009), This is Survivor Research. Ross-on-Wye: PCCS Books.
Wallcraft J, Amering M, Schrank B (2009), Handbook of Service User Involvement in Mental Health Research. John Wiley and Sons.

Winter R, Munn-Giddings C (2001), A Handbook for Action Research in Health and Social Care. Routledge.

PEER-REVIEWED JOURNAL ARTICLES ON PPI IN HEALTH AND SOCIAL CARE RESEARCH

General introductory papers on PPI in health and social care research

Abma TA, Nierse CJ, Widdershoven GAM. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qualitative Health Research 2009,19(3), 401-415.

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, doi: 10.1111/j.1369-7625.2010.00660.x
Barber R, Beresford P, Boote J, Cooper C, Faulkner A (2011). Evaluating the impact of public involvement on research: A prospective case study. International Journal of Consumer Studies, DOI: 10.1111/j.1470-6431.2011.01017.x.
Barber R, Boote J, Cooper C. Involving consumers successfully in NHS research: a national survey. Health Expectations 2007, 10 (4), 380-391.
Barnes, C. 1996: Disability and the myth of the independent researcher. Disability and Society, 11 (2) 107-110.
Bastian, H. Editorial: Consumer and researcher collaboration in trials: filling the gaps. Clinical Trials, 2005, 2(1), 3-4.
Beresford, P. The role of service user research in generating knowledge-based health and social care: from conflict to contribution. Evidence and Policy, 2007, 3/3(329-341).
Beresford P. User involvement, research and health inequalities: developing new directions. Health & Social Care in the Community, 2007, 15/4(306-12).
Beresford, P. (2003), “User Involvement in Research: Exploring the Challenges,” NT Research, Vol. 8, No. 1, pp. 36–46.
Beresford, P. User involvement in research and evaluation: liberation or regulation? Social Policy and Society, 2002, 1/2(95-105).
Bhan, A., J. A. Singh, R. E. G. Upshur, P. A. Singer, and A. S. Daar (2007), “Grand challenges in Global Health: Engaging Civil Society Organisations in Biomedical Research in Developing Countries,” PLoS Medicine, Vol. 4, No. 9, pp. 1456–59.
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, 5(11), 91-111.
Boote J, Barber R, Cooper C. Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and sub-group analysis. Health Policy, 2006, 755 (3), 280-297.
Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy, 2002, 61(2), 213-236.
Boyce W. Participation of disability advocates in research partnerships with health professionals. Canadian Journal of Rehabilitation, 1998, 12/2(85-93).
Buckley B. There's a will...but is there a way? Patient perspectives in healthcare research, development, and decision making. Journal of Wound, Ostomy, & Continence Nursing, January 2005, 32/1(53-6; discussion 56-7).
Bury, M. 1996: Disability and the Myth of the Independent Researcher: A Reply. In Disability and Society, 11 (2) 111-113.
Caldon LJM, Marshall-Cork H, Speed G, Reed MWR, Collins CA. Consumers as researchers – innovative experiences in UK National Health Service Research. International Journal of Consumer Studies, 2010, 34, 547–550.
Callard F, Rose D, Wykes T. Close to the bench as well as at the bedside: involving service users in all phases of translational research. Health Expectations, 2011, doi: 10.1111/j.1369-7625.2011.00681.x.
Caron-Flinterman, J., Broerse, J. & Bunders, J. The experiential knowledge of patients: a new resource for biomedical research? Social Science & Medicine, 2005, 60, 2575-2584.
Carrick R, Mitchell A, Lloyd K. User involvement in research: Power and compromise. Journal of Community & Applied Social Psychology, 2001, 11/3(217-225).
Chalmers I. What do I want from health research and researchers when I am a patient? BMJ, 310, 1315-1318.
Chambers E, Clarke A & Cooke J. (2009) Patient and public involvement in research in the community. Journal of Community Nursing. 23 (7), 10-14.
Chambers R, O'Brien LM, Linnell S, Sharp S. Why don't health researchers report consumer involvement? Quality in Primary Care, 2004, 12/2(151-157).
Coats AJ. Consumer involvement in cardiovascular research: ways to combat bias and secrecy. International Journal of Cardiology, 2000, 75/1(1-3).
Couldrick L. Consumer involvement in research: reflections of a professional symposium on collaborative research. British Journal of Therapy & Rehabilitation, 2000, 7/7(294-299).
Denis J, Lomas J Convergent evolution: the academic and policy roots of collaborative research. Journal of Health Services Research and Policy, 2003, 8 (supplement 2), S2:1-S2:6
Dona, G. 2007. The Microphysics of participation in refugee research. Journal of Refugee Studies, 20, (2) 210-229.
Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: advantages for health research. BMJ, 1998, 316/7129(463-6).
Epstein S. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology & Human Values, 1995, 20(4), 408-437.
Fox R. What do patients want from medical research? Journal of the Royal Society of 2007, edicine, 1996, 89/6(301-2).
Ghulam S, Shah S, 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, 23/1(131-137).
Golder S, Light K, Wright K. Promoting public involvement in health services research. Journal of Health Services & Research Policy, 2006, 11/3(187-8).
Goodare, H, Lockwood S. Involving patients in clinical research. BMJ, 319, 724-725.
Goodare, H. & Smith, R. 1995. The Rights of Patients in Research - Patients Must Come First in Research. British Medical Journal, 310, (6990) 1277-1278
Graham J, Broom D, Whittaker A. Consulting about consulting: challenges to effective consulting about public health research. Health Expectations, 2001, 4/4(209-212).
Griffiths KM, Jorm AF, Christensen H. Academic consumer researchers: a bridge between consumers and researchers. Australian & New Zealand Journal of Psychiatry, 2004, 38/4(191-196).
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, 322/7285(519-523).
Hanley B. Involving consumers in research. Midwifery Digest, 2000, 10/1(113-117).
Herxheimer A. The contribution of consumers and patients to clinical research. Tokai Journal of Experimental & Clinical Medicine, 1997, 22/6(257-8).
Hewlett, S., de Wit, M., Richards, P., Quest E., Hughes, R., Heiberg, T., Kirwan, J. Patients and professionals as research partners: Challenges, practicalities and benefits. Arthritis & Rheumatism, 55(4), 676-680.
Hope, T. 1998. Medical research needs lay involvement. Journal of Medical Ethics, 24, (5) 291-292
Horsfall J, Cleary M, Walter G, Malins G. Challenging conventional practice: placing consumers at the centre of the research enterprise. Issues in Mental Health Nursing, 2007, 28/11(1201-1213).
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(1), 60-67.
Howe A, Delaney S, Romero J, Tinsley A, Vicary P (2010), Public involvement in health research: a case study of one NHS project over 5 years. Primary Health Care Research & Development 2010; 11: 17–28.
Iredale R, Longley M. From passive subject to active agent: the potential of Citizens' Juries for nursing research. Nurse Education Today, 2007, 27/7(788-795).
Kernick D, Mitchell A Working with lay people in health service research: A model of co-evolution based on complexity theory. Journal of Interprofessional Care, 2010, Available online at: DOI: 10.1080/13561820903012073
Langston A.L, McCallum M, Campbell MK, Robertson C, Ralston SH. An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial. Clinical Trials, 2(1), 80-87.
Li LC, Koehn C, Lehman AJ. People with arthritis and their families in rehabilitation, care and research. Current Opinion in Rheumatology, 2007, 19/2(174-178).
Liberati A. Consumer participation in research and health care. BMJ, 1997, 315/7107(499).
Liberty KA, Laver A, Sabatino D. Collaborative partnerships in evaluation and experimental rehabilitation research. International Journal of Rehabilitation Research, 1999, 22/4(283-290).
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, 10/3(268-277).
Lister S, Mitchell W, Sloper P, Roberts K. Participation and partnerships in research: Listening to the ideas and experiences of a parent-carer. International Journal of Social Research Methodology: Theory & Practice, 2003, 6/2(159-165).
Lloyd M, Preston-Shoot, Temple B, Wuu R. Whose project is it anyway? Sharing and shaping the research and development agenda. Disability and Society, 1996, 11(3), 301 – 316.
Lopez J, Lewis I, Abello J, Beattie M, Mapp D, Prior P, Wood G. ‘On the inside’: Research in partnership with a client reference group. Journal of Social Inclusion, 2010 1(2), 167-180.
Maggs C, Langley C. Why patients miss primary care appointments: involving patients in research. Primary Health Care, 2008, 18/2(34-37).
Maslin-Prothero S. Developing user involvement in research. Journal of Clinical Nursing, 2003, 12/3(412-421).
McKevitt C, Fudge N, Wolfe C. What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke. Health Expectations, 2010, 13(1), 86-94.
McLaughlin, H. Keeping service user involvement in research honest. British Journal of Social Work, published online in June 2009 at doi:10.1093/bjsw/bcp064.
Miller E, Cook A, Alexander H, Cooper S, Hubbard G, Morrison J, Petch A. challenges and strategies in collaborative working with service user researchers: reflections from the academic researcher. Research, Policy and Planning, 2006, 24(3), 197-208.
Minogue V, Boness J, Brown A, Girdlestone, J. The impact of service user involvement in research. International Journal of Health Care Quality Assurance, 2005, 18/2(103-112).
Minogue V, Girdlestone J. Building capacity for service user and carer involvement in research: The implications and impact of best research for best health. International Journal of Health Care Quality Assurance 2010, 23(4), 422-435.
Mitchell M, Salmon D. Professional issues. Involving the user in midwifery research. British Journal of Midwifery, 1999, 7/6(389-393).
Morrow E, Ross F, Grocott P, Bennett J. A model and measure for quality service user involvement in health research. International Journal of Consumer Studies, 2010, 34 532–539.
Mosconi P, Colombo C. Fostering a strategic alliance between patients' associations and health care professionals. Journal of Ambulatory Care Management, 2010, 33(3), 223–230.
Newell CJ, South J. Participating in community research: exploring the experiences of lay researchers in Bradford. Community, Work & Family, 2009, 12(1), 75-89.
Niesz T, Koch L, Rumrill, PD. The empowerment of people with disabilities through qualitative research. Work: Journal of Prevention, Assessment & Rehabilitation, 2008, 31/1(113-125).
O'Connel D, Mosconi P. An Active Role for Patients in Clinical Research? Drug Development Research, 2006, 67, (188-192).

Oliver M. (1992) Changing the social relations of research production? Disability, Handicap Soc, 7: 101–14.

Oliver M. & Barnes C. (1997) All we are saying is give disabled researchers a chance. Disability Soc, 12: 811–3.

Oliver S. How can health service users contribute to the NHS research and development programme? BMJ 1995;310:1318-1320 (20 May).

Oliver S. The progress of lay involvement in the NHS Research and Development Programme. Journal of Evaluation in Clinical Practice, 1996, 2/4(273-80).

Oliver SR, Rees RW, Clarke-Jones L, Milne R, Oakley AR, Gabbay J, Stein K, Buchanan P, Gyte G. A multidimensional conceptual framework for analysing public involvement in health services research. Health Expectations, 2008, 11/1(72-84).
Ong BN, Hooper H. Involving users in low back pain research. Health Expectations, 2003, 6/4(332-341).
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, 10/3(150-161).
Paterson C. How to involve consumers in your research team. Complementary Therapies in Medicine, 2005, 13/1(61-4).
Preston-Shoot M. Whose lives and whose learning? Whose narratives and whose writing? Taking the next research and literature steps with experts by experience. Evidence and Policy: A Journal of Research, Practice and Debate, 2007, 3(3), 343-359.
Purtell RA, Wyatt KM. Measuring something real and useful in consumer involvement in health and social care research. International Journal of Consumer Studies 35 (2011) 605–608
Reid G, Kinsella E, Cooke P, Shotton D, Porcellato L. Consumer involvement in research using oral history:‘What are people’s experiences of health and well-being in Halton? International Journal of Consumer Studies, 2010, 34, 540–546.
Renvoize E, Patel J. Consumer voices steer the course of research. Journal of Dementia Care, 2002, 10/5(37-38).
Rickard W, Purtell R. Finding a way to pay in the UK: methods and mechanisms for paying service users involved in research. Disability & Society, 2011, 26: 1, 33 - 48.
Robinson K, Temple B, Lloyd M, Preston-Shoot M, Wuu O. Combining methods, constructing needs and consulting service users: reflections on a research project. Health and Social Care in the Community, 1996, 4/5(300-303).
Robinson L, Newton J, Dawson P. Professionals and the public: power or partnership in health research. Journal of Evaluation in Clinical practice, 2010. DOI: 10.1111/j.1365-2753.2010.01572.x
Rosenbaum P. From research to clinical practice: considerations in moving research into people’s hands. Personal reflections that may be useful to others. Developmental Neurorehabilitation, 2005, 8(3), 165-171.
Sanders, D., R. Labonte, F. Baum, and M. Chopra (2004), “Making Research Matter: A

Civil Society Perspective on Health Research,” Bulletin of the World Health Organization, Vol. 82, No. 10, pp. 757–63.

Saunders C, Girgis A. Status, challenges and facilitators of consumer involvement in Australian health and medical research. Health Research Policy and Systems, 2010, 8:34. doi:10.1186/1478-4505-8-34.
Savory C. Patient and public involvement in translative healthcare research. Clinical Governance: An International Journal, 2010, 1593), 191-199.
Shakespeare, T. 1996: Rules of Engagement: Doing Disability Research. Disability and Society, 11 (2) 115-119.
Smith E, Ross F, Donovan S, Manthorpe J, Brearley S, Sitzia J, Beresford P. Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice. International Journal of Nursing Studies, 2008, 45/2(298-315).
Staley K and Minogue V. User involvement leads to more ethically sound research. Clinical Ethics, 2006, 1(2), 95-100.

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