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Introduction and scope of the bibliography


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Involvement of people with cancer in health and social care research

Braun, K.L., Tsark, J.U., Santos, L., Aitaoto, N., & Chong, C. 2006. Building native Hawaiian capacity in cancer research and programming - A legacy of 'Imi Hale. Cancer, 107, (8) 2082-2090.


Collins K, Stevens T, Ahmedzai SH. Can consumer research panels become an integral part of the cancer research community? Clinical Effectiveness in Nursing, 2005, 9/3-4(112-118).
Halbert, C.H., Weathers, B., & Delmoor, E. 2006. Developing an academic-community partnership for research in prostate cancer. Journal of Cancer Education, 21, (2) 99-103
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, 1, 21-33.
McCormick S, Brody J, Brown P, Polk R. Public involvement in breast cancer research: an analysis and model for future research. International Journal of Health Services, 2004, 34/4(625-646).
Stevens T, Wilde D, Hunt J, Ahmedzai SH. Overcoming the challenges to consumer involvement in cancer research. Health Expectations, 2003, 6/1(81-88).
Thornton, H. 2002. Patient perspectives on involvement in cancer research in the UK. European Journal of Cancer Care, 11, (3) 205-209.
Wright DN, Hopkinson JB, Corner JL, Foster CL. How to involve cancer patients at the end of life as co-researchers. Palliative Medicine, 2006, 20/8(821-827).

PPI in research advisory groups and other groups and committees

Dyer S. Rationalising public participation in the health service: the case of research ethics committees. Health and Place, 2004, 10, 339-348.


Glasby J, Beresford P. In whose interests? Local Research Ethics Committees and service user research. Ethics and Social Welfare 2007, 1(3), 282– 292.
Ong YL, Benbow S, Black S, Garner J. A consumer group: reflections on experience of involving users and carers in the work of the Faculty of Old Age Psychiatry. Quality in Ageing, 2007, 8/2(45-49).
Rhodes P, Nocon A, Booth M, Chowdrey MY, Fabian A, Lambert N, Mohammed F, Walgrove T. A service users' research advisory group from the perspectives of both service users and researchers. Health & Social Care in the Community, 2002, 10/5(402-9).
Rhodes P, Nocon A, Wright J, Harrison S Involving patients in research: setting up a service users' advisory group. Journal of Management in Medicine, 2001, 15/2(167-71).
Phillips W, Grams G. Involving patients in primary care research meeting worked well. BMJ 326 (7402), 1329.
Wilson C, Fothergill A, Rees H. A potential model for the first all Wales mental health service user and carer-led research group. Journal of Psychiatric and Mental Health Nursing, 2010, 17, 31–38.

m_1473 31..38



PPI in data collection
Clark CC, Scott EA, Boydell KM, Goering P. Effects of client interviewers on client reported satisfaction with mental health services. Psychiatric Services, 1999, 50(7), 961-963.
Eakin, E.G., Bull, S.S., Riley, K., Reeves, M.M., Gutierrez, S., & McLaughlin, P. 2007. Recruitment and retention of Latinos in a primary care-based physical activity and diet trial: The Resources for Health study. Health Education Research, 22, (3) 361-371.
Elliott E, Watson A, Harries U. Harnessing expertise: involving peer interviewers in qualitative research with hard-to-reach populations. Health Expectations, 2002, 5, 172-178.
Godfrey M. ‘More than 'involvement': How commissioning user interviewers in the research process begins to change the balance of power. Practice, 2004, 16/3(223-231).
Hodges JQ. Inclusion of mental health consumers on research teams. Psychiatric Services, 2005, 56/9(1158-9).
Hopkins C, Niemiec S. The development of an evaluation questionnaire for the Newcastle Crisis Assessment and Home Treatment Service: finding a way to include the voices of service users. Journal of Psychiatric and Mental Health Nursing, 2006, 13(1), 40–47.
Johns T, Miller P, Kopp K, Carter Z, Cooper G, Johnston J, Nicholas Z, Wright N. Equal lives? Disabled people evaluate and independent living strategy for Essex Social Services. Research Policy and Planning, 2004, 22(2), 51-57.
Williams V, Simons K and Swindon People First Research Team. More researching together: the role of nondisabled researchers working with People First members. British Journal of Learning Disabilities, 2005, 33, 6-14.
Wood M. Disability, participation and welfare to work in Staffordshire. Journal of Integrated Care, 2003, 1192), 43-48.
PPI in analysing and interpreting data
Entwistle V. Editorial: Involving service users in qualitative analysis: approaches and assessment. Health Expectations, 2010, 13(2), 111-112.
Cashman SB, Adeky S, Allen AJ III, Corburn J, Israel BA, Montano J, Rafelito A, Rhodes SD, Swanston S, Wallerstein N, Eng E. The power and the promise: working with communities to analyze data, interpret findings, and get to outcomes. American Journal of Public Health, 2008, 98(8), 1407-1417.
Cotterell P. Exploring the value of service user involvement in data analysis: 'Our interpretation is about what lies below the surface'. Educational Action Research, 2008, 16/1(5-17).
Tuffrey-Wijne I, Butler G. Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis. Health Expectation. Published Online, Sep 8 2009.
PPI in disseminating and implementing research findings
Scharff, D.R. & Mathews, K. 2008. Working with communities to translate research into practice. Journal of Public Health Management and Practice, 14, (2) 94-98.
Wilson MG, Lavis JN, Travers R, Rourke SB. Community-based knowledge transfer and exchange: Helping community-based organizations link research to action. Implementation Science 2010, 5:33. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2873302/pdf/1748-5908-5-33.pdf
PPI in secondary research and health technology assessment
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, 82/1, (37-50).
Bastian H, Scheibler F, Knelangen M, Zschorlich B, Nasser M, Waltering A. Choosing health technology assessment and systematic review topics: The development of priority-setting criteria for patients’ and consumers’ interests. International Journal of Technology Assessment in Health Care, 27:4 (2011), 348–356.


Bero LA, Jadad AR. How consumers and policymakers can use systematic reviews for decision making. Annals of Internal Medicine 1997, 127(1), 37-42.

Boote J, Baird W, Sutton A (2011), Public involvement in the systematic review process in health and social care: a narrative review of case examples. Health Policy, doi:10.1016/j.healthpol.2011.05.002


Braye S, Preston-Shoot M. Emerging out of the shadows? Service user and carer involvement in systematic reviews. Evidence and Policy: A Journal of Research, Debate and Practice, 2005, 1(2), 173-194.
Bridges JFP, Jones C. Patient-based health technology assessment: a vision of the future. International Journal of Technology Assessment in Health Care, 2007, 23(1):30-35.
Collier A, Johnson K, Heilig L, Leonard T, Williams H, Dellavalle RP. Letter: A win-win proposition: fostering US health care consumer involvement in the Cochrane Collaboration Skin Group. Journal of the American Academy of Dermatology, 2005, 53/5, (920-1).
Coulter, A. 2004. Perspectives on health technology assessment: response from the patient's perspective. International Journal of Technology Assessment in Health Care, 20, (1) 92-96.
Culyer AJ. Involving stakeholders in healthcare decisions - the experience of the National Institute for Health and Clinical Excellence (NICE) in England and Wales. Healthcare Quarterly, 2005, 8/3(56-60).
Entwistle V, Watt IS, Davis H, Dickson R, Pickard D, Rosser J. Developing information materials to present the findings of technology assessments to consumers: The Experience of the NHS Centre for Reviews and Dissemination. International Journal of Technology Assessment in Health Care (1998), 14:47-70
Facey, K., Boivin, A., Gracia, J., Hansen, H.P., Lo Scalzo, A., Mossman, J., & Single, A. 2010. Patients' perspectives in health technology assessment: A route to robust evidence and fair deliberation. International Journal of Technology Assessment in Health Care, 26, (3) 334-340
Fattal J, Lehoux P. Health technology assessment use and dissemination by patient and consumer groups: Why and how? International Journal of Technology Assessment in Health Care, 24:4 (2008), 473–480.
Gagnon MP , Lepage-Savary D, Gagnon, J St-Pierre M, Simard C, Rhainds M, Lemieux R, Gauvin F-P, Desmartis M, Legare F. Introducing patient perspective in health technology assessment at the local level. BMC Health Services Research 2009, 9:54.
Gauvin F-P, Abelson J, Giacomini M, Eyles J, Lavis JN. “It all depends”: Conceptualizing public involvement in the context of health technology assessment agencies. Social Science and Medicine, 2010, 70, 1518-1526.
Ghersi D. Making it happen: approaches to involving consumers in Cochrane reviews. Evaluation & the Health Professions, 2002, 25/3(270-283).
Hailey D, Nordwall M. Survey on the involvement of consumers in health technology assessment programs. International Journal of Technology Assessment in Health Care, 2006, 22/4(497-9).
Harding, E., Brown, D., Hayward, M., & Pettinari, C.J. 2010. Service user perceptions of involvement in developing NICE mental health guidelines: A grounded theory study. Journal of Mental Health, 19, (3) 249-257
Hivon, M., Lehoux, P., Denis, J.L., & Tailliez, S. 2005. Use of health technology assessment in decision making: Coresponsibility of users and producers? International Journal of Technology Assessment in Health Care, 21, (2) 268-275
Johanson R, Rigby C, Newburn M, Stewart M, Jones P. Suggestions in maternal and child health for the National Technology Assessment Programme: a consideration of consumer and professional priorities. Journal of the Royal Society of Health, 2002, 122/1(50-4).
Kelson M. Consumer collaboration, patient-defined outcomes and the preparation of Cochrane Reviews. Health Expectations, 1999, 2/2(129-135).
Keown K, Van Eerd D, Irvin E. Stakeholder engagement opportunities in systematic reviews: knowledge transfer for policy and practice. Journal of Continuing Education in the Health Professions, 2008, 28/2(67-72).
Legare F, Boivin A, van der Weijden T, Packenham, C, Tapp S, Burgers J. A knowledge synthesis of patient and public involvement in clinical practice guidelines: study protocol. Implementation Science 2009, 4:30 doi:10.1186/1748-5908-4-30.
Menon D, Stafinski T. Engaging the public in priority-setting for health technology assessment: findings from a citizens' jury. Health Expectations, 2008, 11/3(282-93).
Moran R, Davidson P. An uneven spread: A review of public involvement in the National Institute of Health Research's Health Technology Assessment program. International Journal of Technology Assessment in Health Care 2011,27:343-347.
Oliver S, Milne R, Bradburn J, Buchanan P, Kerridge L, Walley T, Gabbay J (2001) Investigating consumer perspectives on evaluating health technologies. Evaluation 7(4): 468-486.
Oortwijn, W.J., Vondeling, H., & Bouter, L. 1998. The use of societal criteria in priority setting for health technology assessment in the Netherlands - Initial experiences and future challenges. International Journal of Technology Assessment in Health Care, 14, (2) 226-236.
Ong BN. The lay perspective in health technology assessment. International Journal of Technology Assessment in Health Care, 1996, 12/3(511-7).
Pivik J, Rode E, Ward C. A consumer involvement model for health technology assessment in Canada. Health Policy, 01 August 2004, 69/2(253-268).
Quennell P. Getting a word in edgeways? Patient group participation in the appraisal process of the National Institute for Clinical Excellence. Clinical Governance: An International Journal, 2003, 8/1(39-45).
Quennell P. Getting their say, or getting their way? Has participation strengthened the patient "voice" in the National Institute for Clinical Excellence? Journal of Management in Medicine, 2001, 15/3(202-19).
Royle J, Oliver S. Consumer involvement in the health technology assessment program. International Journal of Technology Assessment in Health Care, 2004, 20/4(493-7).
Sakala C, Gyte G, Henderson S, Neilson JP, Horey D. Consumer-professional partnership to improve research: the experience of the Cochrane Collaboration's Pregnancy and Childbirth Group Birth, June 2001, 28/2(133-7).

Schünemann HJ, Fretheim A, Oxman, AD. Improving the use of research evidence in guideline development: 10. Integrating values and consumer involvement. Health Research Policy and Systems 2006, 4:22 doi:10.1186/1478-4505-4-22


Serrano-Aguilar P, Trujillo-Martín MM, Ramos-Goñi JM, Mahtani-Chugan V, Perestelo-Pérez L, Posada-de la Paz M. Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias. Social Science & Medicine, 2009, 69(6), 920-925.
Shea B, Santesso N, Qualman A, Heiberg T, Leong A, Judd M, Robinson V, Wells G, Tugwell P, Cochrane Musculoskeletal Consumer Group. Consumer-driven health care: building partnerships in research. Health Expectations, 2005, 8/4(352-9).
Smith E, Donovan S, Beresford P, Manthorpe J, Brearley S, Sitzia J, Ross F. Getting ready for user involvement in a systematic review. Health Expectations, 2009, 197-208.
van de Bovenkamp and Trappenburg MJ. Reconsidering Patient Participation in Guideline Development. Health Care Anal,2009 17:198–216.
van Wersch, A, Eccles, M. Involvement of consumers in the development of evidence based clinical guidelines: practical experiences form the north of England evidence based guideline development programme. Quality in Health Care, 2001, 10/1(10-16).
Wale J, Colombo C, Belizan M, Nadel J International Health Consumers in The Cochrane Collaboration: Fifteen Years On. Journal of Ambulatory Care Management, 2010, 33(3), 182–189.
Reflections on and examples of user-led research
Abell S, Ashmore J, Beart S, Brownley P, Butcher A, Clarke Z, Combes H, Francis E, Hayes S, Hemmingham I, Hicks K, Ibraham A, Kenyon E, Lee D, McClimens A, Collins M, Newton J, Wilson D. Including everyone in research: The Burton Street Research Group, British Journal of Learning Disabilities, 2007, 35/2(121-124).
Beresford P. Developing the theoretical basis for service user/survivor-led research and equal involvement in research. Epidemiologia e Psichiatria Sociale, 2005, 14/1(4-9).
Cambridge P, Forrester-Jones, R. Using individualized communication for interviewing people with intellectual disability: A case study of user-centred research. Journal of Intellectual & Developmental Disability, 2003, 28/1(5-23).
Couzos S, Lea T, Murray R, Culbong M. 'We are not just participants--we are in charge': the NACCHO ear trial and the process for Aboriginal community-controlled health research. Ethnicity & Health, 2005, 10/2(91-111).
Evans C, Evans R. What users have to say about their own organisations: a local user-controlled study. Journal of Integrated Care, 2004, 12/3(38-46).
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