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Introduction and scope of the bibliography


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Staniszewska S, Adebajo A, Barber R, Beresford B, Brady L-M,Brett J, Elliott J, Evans D, Haywood KL, Jones D, Mockford C, Nettle M, Rose D, Williamson T. Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact. International Journal of Consumer Studies 35 (2011) 628–632

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


Stone, E. and Priestley, M. 1996: Parasites, Pawns and Partners: disability research and the role of non-disabled researchers. In British Journal of Sociology, 47 (4) 699-716.
Sutton J, Weiss M. Involving patients as advisers in pharmacy practice research: what are the benefits? International Journal of Pharmacy Practice, 2008, 16(4), 231-238.
Szmukler G. Service users in research and a ‘well ordered science’. Journal of Mental Health, 2009, 18(2), 87-90.
Tallon, D., Chard, J., & Dieppe, P. 2000. Consumer involvement in research is essential. British Medical Journal, 320, (7231) 380-381.
Telford, R, Beverley C, Cooper C, Boote J. Consumer involvement in health research: fact or fiction? Clinical Governance: An International Journal, 2002, 7 (2), 92-103.
Telford R, Boote J, Cooper C. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expectations 2004, 7 (3), 209-220.
Terry, S., Terry, P., Rauen K., Uitto J. & Bercovitch, L. Advocacy groups as research organisations: the PXE International example. Nature Reviews Genetics, 2007, 8(2), 157-164
Thompson J, Barber R, Ward PR, Boote JD, Cooper CL, Armitage CJ, Jones GJ. Health researchers’ attitudes towards public involvement in health research. Health Expectations, 2009, 12(2), 209-220.
Thornton, H. 2002. Thrombolysis for acute ischaemic stroke - Good quality research that addresses patients' needs is required. British Medical Journal, 325, (7376) 1363-1364.
Thornton, H. 2001. Consumers and trials. Lancet, 358, (9283) 763.
Thornton, H. What research means to patients, and the importance of partnership with practitioners in research. Journal of Radiotherapy in Practice (2009) 8, 79-85.
Thornton H. Patients and health professionals working together to improve clinical research: where are we going? European Journal of Cancer, 2006, 42/15(2454-2458).
Thornton H, Edwards A, Elwyn G. Evolving the multiple roles of 'patients' in health-care research: reflections after involvement in a trial of shared decision-making. Health Expectations, 2003, 6/3(189-189).
Till JE, Meyer KR. Public involvement in science and decision-making. Health Physics, 2001, 80/4(370-8).
Tosounidis, T.I. & Kontakis, G.M. 2008. Clinical research: The patients' perspectives. Injury-International Journal of the Care of the Injured, 39, (6) 631-635.
Truman C, Raine P. Involving users in evaluation: the social relations of user participation in health research Critical Public Health, 11(3), 215-229.
Walter I, Davies H, Nutley S. Increasing research impact through partnerships: evidence from outside health care. Journal of Health Services Research and Policy, 2003, 8(supplement 2), S2:58-S261
Ward PR, Thompson J, Barber R, Armitage CJ, Boote JD, Cooper CL, Jones GL. Critical perspectives on 'consumer involvement' in health research: epistemological dissonance and the know-do gap. Journal of Sociology, 2010, 46, 63-82.
White A, Purtell R, Barr G. Consumer involvement in CAM research. Complementary Therapies in Medicine, 2001, 9/4(205-6).
Whitstock MT. Seeking evidence from medical research consumers as part of the medical research process could improve the uptake of research evidence. Journal of Evaluation in Clinical Practice, 2003, 9 (2), 213 – 224.
Wickman J, Collin G. Involving users in social science research – a new European paradigm? European Journal of Education, 2006, vol 41, no.2, p269-280.
Williamson C. What does involving consumers in research mean? QJM: An Interrnational Journal of Medicine, 2001, 94/12(661-4).

Williamson T, Brogden J, Jones E, Ryan J. Impact of public involvement in research on quality of life and society: a case study of research career trajectories. International Journal of Consumer Studies, 2010, 34 551–557.


Wright D, Foster C, Amir Z, Elliott, J, Wilson R. Critical appraisal guidelines for assessing the quality and impact of user involvement in research. Health Expectations, published online Jul 9 2010 DOI: 10.1111/j.1369-7625.2010.00607.x
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, 25/3(154-61).
Zarb, G. 1992 ‘On the Road to Damascus: first steps towards changing the relations of disability research production’, Disability, Handicap and Society 7(2): 125-38.
PPI in identification of research questions and research prioritisation
Abma T, Broerse J. Patient participation as dialogue: setting research agendas. Health Expectations, 2010, 13(2), 160-173.
Abma T. Patient participation in health research: research with and for people with spinal cord injuries. Qualitative Health Research, 2005, 15(10), 1310-1328.
Abma TA. Patients as partners in a health research agenda setting: the feasibility of a participatory methodology. Evaluation & the Health Professions, 2006, 29/4(424-439).
Alderete E. The formulation of a health research agenda by and for indigenous peoples: contesting the Western scientific paradigm. Journal of Alternative & Complementary Medicine, 1996, 2/3(377-85).
Broerse J, Zweekhorst M, van Rensen A, de Haan M. Involving burn survivors in agenda setting on burn research: An added value? Burns, 2010, 36(2) 217-231.
Brown K, Dyas J, Chahal P, Khahil Y, Cummings-Jones J. Discovering the research priorities of people with diabetes in a multicultural community: a focus group study. Br J Gen Pract. 2006 March 1; 56(524): 206–213.
Buckley BS, Grant AM, Tincello DG, Wagg AS, Firkins L. Prioritizing research: patients, carers, and clinicians working together to identify and prioritize important clinical uncertainties in urinary incontinence. Neurourology and Urodynamics, 2010; 29: 708–714.
Burhansstipanov L Community-driven Native American cancer survivors' quality of life research priorities. Journal of Cancer Education 2005, 20/1(7-11).
Calnan M, Masey H, Horwood J. Public assessment of priorities for research: a citizens’ jury. Lancet 2007;369:28.
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, 8/3(253-263).
Caron-Flinterman JF, Broerse JEW, Teerling J, van Alst, MLY, Klaasen S, Swart LE, Bunders JG. Stakeholder participation in health research agenda setting: the case of asthma and COPD research in the Netherlands. Science and Public Policy, 2006, 33 (4), 291-304.
Caron-Flinterman JF, Broerse JEW, Bunders JG. Patient Partnership in decision-making on biomedical research. Science, Technology & Human Values, 2007 ,32 (3), 339-368
Cohen CI. Consumer preferences for psychiatric research. Psychiatric Services, 2000, 51/7(936-7).
Cohen CI, D'Onofrio A, Larkin L, Berkholder P, Fishman H. A comparison of consumer and provider preferences for research on homeless veterans. Community Mental Health Journal, 1999, 35/3(273-80).
Corner J, Wright D, Hopkinson J, Gunaratnam Y, McDonald JW, Foster C. The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study. British Journal of Cancer, 2007 96, 875–881.
Elberse JE, Caron-Flinterman JF, Broerse JEW. Patient–expert partnerships in research: how to stimulate inclusion of patient perspectives. Health Expectations, 2011, doi: 10.1111/j.1369-7625.2010.00647.x.
Elwyn, G., Crowe, S., Fenton, M., Firkins, L., Versnel, J., Walker, S., Cook, I., Holgate, S., Higgins, B., & Gelder, C. 2010. Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions. Journal of Evaluation in Clinical Practice, 16, (3) 627-631
Entwistle V, Calnan M, Dieppe P. Consumer involvement in setting the health services research agenda: persistent questions of value. Journal of Health Services & Research Policy, 2008, 13 Suppl 3/(76-81).
Fisher, M. The role of service users in problem formulation and technical aspects of social research. Social Work Education, 2002, 21(3), 305-312.
Gooberman-Hill R, Horwood J, Calnan M. Citizens' juries in planning research priorities: process, engagement and outcome. Health Expectations, 2008 11 (3), 272-281.
Griffiths, K.M., Jorm, A.F., Christensen, H., Medway, J., & Dear, K.B.G. 2002. Research priorities in mental health, Part 2: an evaluation of the current research effort against stakeholders' priorities. Australian and New Zealand Journal of Psychiatry, 36, (3) 327-339
Hammell, K.R.W. 2010. Spinal cord injury rehabilitation research: patient priorities, current deficiencies and potential directions. Disability and Rehabilitation, 32, (14) 1209-1218
Herbison P, Hay-Smith J, Paterson H, Ellis G,Wilson D. Research priorities in urinary incontinence: results from citizens’ juries. BJOG: An International Journal of Obstetrics & Gynaecology 2009, 116(5), 713–718.
Kjeken, I., Ziegler, C., Skrolsvik, J., Bagge, J., Smedslund, G., Tovik, A., Dagfinrud, H.S., Petersson, I.F., & Hagen, K.B. 2010. How to Develop Patient-Centered Research: Some Perspectives Based on Surveys Among People With Rheumatic Diseases in Scandinavia. Physical Therapy, 90, (3) 450-460.
Noonan Walsh, P. A courtly welcome: observations on the research initiative. British Journal of Learning Disabilities, 2003, 31, 190-193.
O'Fallon, L.R., Wolfle, G.M., Brown, D., Dearry, A., & Olden, K. 2003. Strategies for setting a national research agenda that is responsive to community needs. Environmental Health Perspectives, 111, (16) 1855-1860.
O'Keefe, B.M., Kozak, N.B., & Schuller, R. 2007. Research priorities in augmentative and alternative communication as identified by people who use AAC and their facilitators. Augmentative and Alternative Communication, 23, (1) 89-96.
Oliver S. Patient involvement in setting research agendas. European Journal of Gastroenterology & Hepatology, 2006, 18/9(935-938).
Oliver S, Bastian H. Has involving consumers (patients) in research made any difference to what is researched and how? Journal of Health Services & Research Policy, 1999, 4/2(127-8).
Oliver, S., et-al. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Clinical Governance: An International Journal, 2004, 9/4 1477-7274.
Oliver S, Milne R, Bradburn J, Buchanan P, Kerridge L, Walley T, Gabbay J. Involving consumers in a needs-led research programme: a pilot project. Health Expectations, 2001, 4/1(18-18).
Owens C, Ley A, Aitken P. Do different stakeholder groups share mental health research priorities? A four-arm Delphi study. Health Expectations, 2008, 11(4), 418-431.
Patten, S., Mitton, C., & Donaldson, C. 2006. Using participatory action research to build a priority setting process in a Canadian Regional Health Authority. Social Science & Medicine, 63, (5) 1121-1134.
Partridge N, Scadding J. The James Lind Alliance: patients and clinicians should jointly identify their priorities for clinical trials. The Lancet, 2004, 364 (9449), 1923-1924.
Perkins P, Booth S, Vowler SL, Barclay S. What are patients' priorities for palliative care research? A questionnaire study. Palliative Medicine, 2008, 22/1(7-12).
Perkins P, Barclay S, Booth S. What are patients' priorities for palliative care research? Focus group study. Palliative Medicine, 2007, 21/3(219-225),
Petit-Zeman, S., Firkins, L., & Scadding, J.W. 2010. The James Lind Alliance: tackling research mismatches. Lancet, 376, (9742) 667-669.
Resnik, D. B. (2001), “Setting Biomedical Research Priorities: Justice, Science and Public

Participation,” Kennedy Institute of Ethics Journal, Vol. 11, No. 2, pp. 181–204.


Rose, D., Fleischman, P., & Wykes, T. 2008. What are mental health service users' priorities for research in the UK? Journal of Mental Health, 17, (5) 520-530
Royle J, Oliver S. Consumers are helping to prioritise research. BMJ, 2001, 323/7303(48-9).
Smith E, Ross FM, Mackenzie A, Masterson A. Developing a service-user framework to shape priorities for nursing and midwifery research... including commentary by Scott EVC. Journal of Research in Nursing, 2005, 10/1(107-120).
Stewart RJ, Caird J, Oliver K, Oliver S. Patients’ and clinicians’ research priorities. Health Expectations, 2011, doi: 10.1111/j.1369-7625.2010.00648.x.
Tallon D, Chard J, Dieppe P. Relation between agendas of the research community and the research consumer. The Lancet, 2000, 355 (9220), 2037-2040.
Tong, A., Sainsbury, P., Carter, S.M., Hall, B., Harris, D.C., Walker, R.G., Hawley, C.M., Chadban, S., & Craig, J.C. 2008. Patients' priorities for health research: focus group study of patients with chronic kidney disease. Nephrology Dialysis Transplantation, 23, (10) 3206-3214.
Welfare MR, Colligan J, Molyneux S, Pearson P, Barton JR. The identification of topics for research that are important for people with ulcerative colitis. European Journal of Gastroenterology and Hepatology, 2006, 18(9), 939-944.
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(1), 3-12.
Young AF, Chesson RA. Determining research questions on health risks by people with learning disabilities, carers and care-workers. British Journal of Learning Disabilities, 01 March 2008, 36/1(22-31).
PPI in research design and protocol development
Ali K, F C, 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, 865-871.
Boote J, Baird W, Beecroft C. Public involvement at the design stage of primary health research: a narrative review of case examples. Health Policy, 2010, 95(1), 10-23.
Corneli AL, Piwoz EG, Bentley ME, Moses A, Nkhoma JR, Tohill BC, Adair L, Mtimuni B, Ahmed Y, Duerr A, Kazembe P, van der Horst C, UNC Project BAN Study Team. Involving communities in the design of clinical trial protocols: the BAN Study in Lilongwe, Malawi. Contemporary Clinical Trials, 2007, 28/1(59-67).
Edwards V, Wyatt K, Logan S, Britten N. Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy. Health Expectations, 2011, doi: 10.1111/j.1369-7625.2010.00652.x.
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, 3/1(19-30), 1740-7745.
Koops L, Lindley RI.Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial. BMJ, 2002, 325/7361(415).
Marsden J, Bradburn J. Patient and clinician collaboration in the design of a national randomized breast cancer trial. Health Expectations, 2004, 7/1(6-17).
Morris MC, Nadkarni VM, Ward FR, Nelson RM. Exception from informed consent for pediatric resuscitation research: community consultation for a trial of brain cooling after in-hospital cardiac arrest. Pediatrics, 2004, 114/3(776-81).
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