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Introduction and scope of the bibliography


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Staniszewka S, Jones N, Newburn M, Marshall S. User involvement in the development of research bid: barriers, enablers and impacts. Health Expectations, 2007, 10(2), 173-183.

PPI in peer review of research proposals and funding decisions

Andejeski Y, Bisceglio IT, Dickersin K, Johnson JE, Robinson SI, Smith HS, Visco FM, Rich IM. Quantitative impact of including consumers in the scientific review of breast cancer research proposals. Journal of Women's Health & Gender-Based Medicine, 2002, 11/4(379-388).


Andejeski Y, Breslau ES, Hart E, Lythcott N, Alexander L, Rich I, Bisceglio I, Smith HS, Visco FM. Benefits and drawbacks of including consumer reviewers in the scientific merit review of breast cancer research. Journal of Women's Health & Gender-Based Medicine, 01 March 2002, 11/2 (119-136).
Entwistle VA, O'Donnell M. Research funding organisations and consumer involvement. Journal of Health Services & Research Policy, 2003, 8/3(129-31).
Milewa T, Buxton M, Hanney S. Lay involvement in the public funding of medical research: expertise and counter-expertise in empirical and analytical perspective. Critical Public Health, 2008, 18(3), 357– 66.
O'Donnell M, Entwistle V. Consumer involvement in decisions about what health-related research is funded. Health Policy, 2004, 70/3(281-290).
O'Donnell M, Entwistle V. Consumer involvement in research projects: the activities of research funders. Health Policy, 2004, 69/2(229-238).

Saunders C, Girgis A, Butow P, Crossing S, Penman A. Beyond scientific rigour: funding cancer research of public value. Health Policy, 2007, 84(2-3),234-42.

Saunders, C., A. Girgis, P. Butow, S. Crossing, and A. Penman (2008), “From Inclusion to Independence – Training Consumers to Review Research,” Health Research Policy and Systems, Vol. 6, No. 3.


PPI in medical device/intervention development
Browne, N., Grocott, P., Cowley, S., Cameron, J., Dealey, C., Keogh, A., Lovatt, A., Vowden, K. Vowden, P. (2004b), Woundcare research for appropriate products (WRAP): validation of the TELER method involving users, International Journal of Nursing Studies, Vol. 41, pp. 559-71.
Dabbs AV, Myers BA, McCurry KR et al. User centered design and interactive health technologies for patients. Computers, Informatics, Nursing, 2009; 27: 175–183.
Grocott P, Weir H, Bridgelal Ram M. A model of user engagement in medical device development. International Journal of Health Care Quality Assurance Incorporating Leadership in Health Services, 2007; 20: 484–493.
Lowes L, Robling MR, Bennert K, Crawley C, Hambly H, Hawthorne K, Gregory JW, the DEPICTED Study Team. Involving lay and professional stakeholders in the development of a research intervention for the DEPICTED Study. Health Expectations, 2011, doi: 10.1111/j.1369-7625.2010.00625.x
Owens C, Farrand P, Darvill R, Emmens T, Hewis E, Aitken P. Involving service users in intervention design: a participatory approach to developing a textmessaging intervention to reduce repetition of self-harm. Health Expectations, 2011, doi: 10.1111/j.1369-7625.2010.00623.x.
Ram, M.B., Grocott, P.R., & Weir, H.C.M. 2008. Issues and challenges of involving users in medical device development. Health Expectations, 11, (1) 63-71.
Shah SGS, Robinson I. Benefits of and barriers to involving users in medical device technology development and evaluation. International Journal of Technology Assessment in Health Care, 23:1 (2007), 131–137.
Shah SGS, Robinson I, Al Shawi, S. Developing medical device technologies from users’ perspectives: A theoretical framework for involving users in the development process. International Journal of Technology Assessment in Health Care, 25:4 (2009), 514–521.
Involvement of older people in health and social care research
Burholt, V., Nash, P., Naylor, D., & Windle, G. 2010. Training Older Volunteers in Gerontological Research in the United Kingdom: Moving Towards an Andragogical and Emancipatory Agenda. Educational Gerontology, 36, (9) 753-780.
Chambers P & Pickard J (2001) Involving older members of the Lifetime Project in research: a report of research in progress. Education and Ageing 16 (1) 27–38.
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(4), 409-417.
Davies S, Nolan M. Editorial: Nurturing research partnerships with older people and their carers: Learning from experience. Quality in Ageing - Policy, practice and research, 4(4), 2-5.
Dewar BJ. Beyond tokenistic involvement of older people in research - a framework for future development and understanding. Journal of Clinical Nursing, 2005, 14/3a(48-53).
Fenge, L.A. 2010. Striving towards Inclusive Research: An Example of Participatory Action Research with Older Lesbians and Gay Men. British Journal of Social Work, 40, (3) 878-894
Fudge N, Wolfe CDA, McKevitt C. Involving older people in health research. Age and Ageing, 2007, 36, 492-500.
Hockley, J. & Froggatt, K. 2006. The development of palliative care knowledge in care homes for older people: the place of action research. Palliative Medicine, 20, (8) 835-843
Miller E, Morrison J, Cook A. Brief encounter: collaborative research between academic researchers and older researchers. Generations Review, 2006, 16(3/4), 39-41.
Mountain G. Growing research with older people. Quality in Ageing, 2003, 4/4(6-10).
Reed J, Weiner R, Cook G. Partnership research with older people - moving towards making the rhetoric a reality. Journal of Clinical Nursing, 2004, 13/3a(3-10).
Ross F, Donovan S, Brearley S, Victor C, Cottee M, Crowther P, Clark E. Involving older people in research: methodological issues. Health & Social Care in the Community, 2005, 13/3(268-275).
Taylor S. A new approach to empowering older people's forums: Identifying barriers to encourage participation. Practice, 2006, 18(2), 117-128.
Tetley J, Haynes L, Hawthorne M, Odeyemi J, Skinner J, Smith D, Wilson V. Older people and research partnerships. Quality in Ageing, 01 December 2003, 4/4(18-23).
Warren L, Cook J, Clarke N, Hadfield P, Haywood-Reed P, Millen L, Parkinson M, Robinson J, Winfield W. Working with older women in research: some methods-based issues. Quality in Ageing, 01 December 2003, 4/4(24-31).
Involvement of young people and parents in health and social care research
Alderson P. 2001. Research by children. International Journal of Social Research Methodology 4: 139–153.
Bagnoli, A. & Clark, A. 2010. Focus groups with young people: a participatory approach to research planning. Journal of Youth Studies, 13, (1) 101-119.
Bostock J, Freeman J ‘No Limits’: Doing Participatory Action Research with Young People in Northumberland. J. Community Appl. Soc. Psychol., 13: 464–474 (2003).
Broad B, Saunders L. Involving young people leaving care as peer researchers in a health research project: a learning experience. Research, Policy and Planning, 1998, 16(1), 1-9.
Checkoway B, Richards-Schuster K. Youth Participation in Community Evaluation Research. American Journal of Evaluation, 24(1), 2003, pp. 21–33.
Checkoway, Barry and Katie Richards-Schuster. (2004). “Youth Participation in Evaluation and Research as a Way of Lifting New Voices.” Children, Youth and Environments 14(2): 84-98.
Clark J. Participatory research with children and young people: philosophy, possibilities and perils. Action Research Expeditions, 2004. http://www.ecls.ncl.ac.uk/publications/Clark%5E2004-Participatory_research_with_children.pdf
Clavering, E.K. & McLaughlin, J. 2010. Children's participation in health research: from objects to agents? Child Care Health and Development, 36, (5) 603-611
Coad J, Evans R. Reflections on Practical Approachesto Involving Children and Young People in the Data Analysis Process. Children & Society, 22, (2008). 41–52
Dentith, A.M., Measor, L., & O'Malley, M.P. 2009. Stirring Dangerous Waters: Dilemmas for Critical Participatory Research with Young People. Sociology-the Journal of the British Sociological Association, 43, (1) 158-168
Dona G. Children as research advisers: contributions to a ‘methodology of participation’ in researching children in difficult circumstances. International Journal of Migration, Health and Social Care, 2006, 2(2), 22-34.
Flicker S, Guta A, Larkin J, Flynn S, Fridkin A, Travers R, Pole JD, Layne C. Survey Design From the Ground Up: Collaboratively Creating the Toronto Teen Survey. Health Promot Pract 2010 11: 112.
Flicker, S., Maley, O., Ridgley, A., Biscope, S., Lombardo, C., & Skinner, H.A. 2008. e-PAR Using technology and participatory action research to engage youth in health promotion. Action Research, 6, (3) 285-303
Franks M. Pockets of Participation: Revisiting Child-Centred Participation Research. Children & Society 25, (2011) 15–25.
Hill M. Participatory research with children. Child and Family Social Work, 1997, 2, 171-183.
Hutton E, Coxon K. Involving parents as service users in an interprofessional research project. Journal of Interprofessional Care, 2008, 22 (6), 661-663.
Kellett, M. (2010) Empowering Children and Young People as Researchers: Overcoming Barriers and Building Capacity. Child Ind Res DOI 10.1007/s12187-010-9103-1
Kellett, M. (2010) ‘Small shoes, big steps! Empowering children as researchers’ American Journal of Community Psychology, 46, 195–203.
Kellett, M., et al., (2010) WeCan2*: Exploring the implications of young people with learning disabilities engaging in their own research. European Journal of Special Needs Education, 25(1): 31-44.
Kellett M. (2006) Children as researchers: Exploring the impact on education and empowerment. childRight, 226(May), 11-13.
Kellett, M. (2009) Children as researchers: what we can learn from them about the impact of poverty on literacy opportunities? International Journal of Inclusive Education, 13:4, 395-408.
Kellett, M. (2009) Windows on links between education and poverty: what we can learn from 11-year-olds researching children’s literacy? International Journal of Inclusive Education (Special Issue – Education and Poverty), 13(4): 395-408.
Kellett M, Forrest R, Dent N, Ward S. (2004) ‘Just teach us the skills please, we’ll do the rest’: Empowering ten-year-olds as active researchers. Children & Society, 18(5), 329-343.
Kellett, M. and Sahin, A.E. (Guest editors) (2009) ‘Children as researchers: pedagogy and praxis’ Eurasian Journal of Educational Research Special Issue for the 20th Anniversary of the Convention on the Rights of the Child, May Issue ISSN 1302-597X pp. v11-xii.
London JK, Zimmerman K, Erbstein N. Youth-Led Research and Evaluation: Tools for Youth, Organizational, and Community Development. New Directions for Evaluation, 2003, DOI: 10.1002/ev.83.
McLaughlin, H 2007, 'Ethical issues in the involvement of young service users in research' , Ethics and Social Welfare, 1 (2) , pp. 176-193.
McLaughlin H. Involving young service users as co-researchers: Possibilities, benefits and costs. British Journal of Social Work, 2006, 36, 1395-1410.
McLaughlin H Young Service Users as Co-researchers: Methodological Problems and Possibilities. Qualitative Social Work 2005, Vol. 4(2): 211–228.
Murray C. Peer Led Focus Groups and Young People. Children & Society 20 (2006) 273–286.
Nairn K, Higgins J, Sligo J. Youth Researching Youth: “Trading On” Subcultural Capital in Peer Research Methodologies. Teachers College Record, Date Published: June 09, 2007
Petrie S., Fiorelli L, O'Donnell K. If we help you what will change? Participatory research and young people. Journal of Social Welfare and Family Law, 2006, 28(1), 31-45.
Poland, B.D., Tupker, E., & Breland, M. 2002. Involving street youth in peer harm reduction education - The challenges of evaluation. Canadian Journal of Public Health, 93, (5) 344-348.
Schäfer, N, Yarwood, R. Involving young people as researchers: uncovering multiple power relations among youths. Children's Geographies. DOI: 10.1080/14733280801963003.
Smith R, Monaghan M, Broad B. Involving Young People as Co-Researchers: Facing up to the Methodological Issues. Qualitative Social Work, 2002, Vol. 1(2): 191-207.
van Staa AL, Jedeloo S, Latour JM, Trappenburg MJ. Exciting but exhausting: experiences with participatory research with chronically ill adolescents. Health Expectations, Published Online: Aug 13 2009.
Involvement of people with learning difficulties in health and social care research
Brooks M, Davies S. Pathways to participatory research in developing a tool to measure feelings. British Journal of Learning Disabilities, 2010, 36(2), 128 – 133.
Chappell A.L. (2000), Emergence of Participatory Methodology in Learning Difficulty Research: Understanding the Context’, British Journal of Learning Disabilities 28, 38-43.
Duckett, P. S. & Fryer, D. (1998) ‘Developing Empowering Research Practices with People Who Have Learning Disabilities’, Journal of Community & Applied Psychology 8, 57-65.
Gilbert T. Involving people with learning disabilities in research: issues and possibilities. Health & Social Care in the Community, 2004, 12/4(298-308).
Heller T, Pederson EL, Miller AB. Guidelines from the consumer: improving consumer involvement in research and training for persons with mental retardation. Mental Retardation, 1996, 34/3(141-8).
Jurkowski, J.M. 2008. Photovoice as participatory action research tool for engaging people with intellectual disabilities in research and program development. Intellectual and Developmental Disabilities, 46, (1) 1-11
March J, Steingold, B. & Justice, S. (1997) ‘Follow the Yellow Brick Road! People with Learning Difficulties as Co-Researchers’, British Journal of Learning Disabilities, 25, 77-80.
Mcclimens A. What difference does it make who is speaking? Audience, ownership and authority in learning disability research. Journal of Intellectual Disabilities March 2004 vol. 8 no. 1 71-88.
Minkes J, Townsley R, Weston C, Williams C. Having a voice: involving people with learning difficulties in research. British Journal of Learning Disabilities, 1995, 23/3(94-97).
Walmsley, J. Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research. Nursing Inquiry, 2004, 11/1(54-64).
Ward L, Simons K (1998) Practising partnership: involving people with learning difficulties in research, British Journal of Learning Disabilities 26, 128-131.
Williams V. (1999) Researching together. British Journal of Learning Disabilities, 27: 48–51.
Involvement of people with mental health problems in health and social care research
Baart ILMA, Abma TA. Patient participation in fundamental psychiatric genomics research: a Dutch case study. Health Expectations 2010, DOI: 10.1111/j.1369-7625.2010.00634.x
Bengtsson-Tops, A. & Svensson, B. 2010. Mental health users' experiences of being interviewed by another user in a research project. A qualitative study. Journal of Mental Health, 19, (3) 234-242.
Byas A, Hills D, Meech C, Read L, Stacey K, Thompson E, Wood A. Co-researching consumer experiences of child and adolescent mental health services: Reflections and implications. Families, Systems, & Health, March 2002, 20/1(75-89).
Chene, R., Garcia, L., Goldstrom, M., Pino, M., Roach, D.Y.P., Thunderchief, W., & Waitzkin, H. 2005. Mental health research in primary care: Mandates from a community advisory board. Annals of Family Medicine, 3, (1) 70-72.
Clark, M, Glasby J, Lester H. Cases for change: User involvement in mental health services and research. Research Policy and Planning, 2004, 22(2), 31-38.
Faulkner A., Involving clients in counselling and psychotherapy research. Healthcare Counselling & Psychotherapy Journal, 2008, 8/3(16-18).
Faulkner A, Gillespie S, Imlack S, Dhillon K, Crawford M. Learning the lessons together. Mental Health Today, 2008, (24-26).
Gillard S, Borschmann R, Turner K, Goodrich-Purnell N, Lovell K, Chambers M. ‘What difference does it make?’ Finding evidence of the impact of mental health service user researchers on research into the experiences of detained psychiatric patients. Health Expectations, 2010; 13(2): 185–194.
Happell B, Roper C. Consumer participation in mental health research: articulating a model to guide practice. Australasian Psychiatry, 2007, 15/3(237-241).
Kilbourne, A. M., E. Lasky, H. A. Pincus, C. B. Good, S. Cooley, et al. (2008), “The Continuous Improvement for Veterans in Care: Mood Disorders (CIVIC-MD) Study, A VA–Academic Partnership,” Psychiatric Services, Vol. 59, No. 5, pp. 483–85.
Kim KM. Enriching the process of "good science" through participation of people with psychiatric disabilities in all aspects of research. Psychiatric Rehabilitation Journal, 2005, 28/4(403-406).
Krumm, S. & Becker, T. 2006. User involvement in mental health services research. Psychiatrische Praxis, 33, (2) 59-66.
Lammers J, Happell B. Research involving mental health consumers and carers: a reference group approach. International Journal of Mental Health Nursing, 2004, 13/4(262-266).
Lloyd K, Rose D, Fenton M. Identifying uncertainties about the effects of treatments for schizophrenia. Journal of Mental Health, 2006, 1593), 263-268.
MacInnes D, Beer D, Keeble P, Rees D, Reid L. Service-user involvement in forensic mental health careresearch: Areas to consider when developing a collaborative study. Journal of Mental Health, 2010, 1–9, iFirst article.
Macran S, Ross H, Hardy GE, Shapiro DA. The importance of considering clients' perspectives in psychotherapy research. Journal of Mental Health, 1999, 8/4(325-337).
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), 403-413.
Ramon S. Participative mental health research: users and professional researchers working together. Mental Health & Learning Disabilities Care, 2000, 3/7(224-228).
Reeve P, Cornell S, D'Costa B, Janzen R, Ochocka J. From our perspective: consumer researchers speak about their experience in a community mental health research project. Psychiatric Rehabilitation Journal, 2002, 25/4(403-8).
Rose, D. Telling different stories: user involvement in mental health research. Research and Policy Planning, 2004, 22(2), 23-30.
Rose, D. Collaborative research between users and professionals: peaks and pitfalls. Psychiatric Bulletin, 2003, 27, 404-406.
Rose, D. 2008. Service user produced knowledge. Journal of Mental Health, 17, (5) 447-451.
Rose, D., Sweeney, A., Leese, M., Clement, S., Jones, I.R., Burns, T., Catty, J., & Wykes, T. 2009. Developing a user-generated measure of continuity of care: brief report. Acta Psychiatrica Scandinavica, 119, (4) 320-324.
Rose D, Wykes T, Farrier D, Doran A-M, Sporle T, Bogner D. What do clients think of cognitive remediation therapy? A consumer-led investigation of satisfaction and side effects. American Journal of Psychiatric Rehabilitation, 2008; 11: 181–204.
Salvi, G., Jones, J., & Ruggeri, M. 2005. Systematic review of the role of service users as researchers in mental health studies. Epidemiologia e Psichiatria Sociale, 14, (4) 217-226.
Schneider B, Scissons H, Arney L, Benson G, Derry J, Misurelli N, Nickerson D, Sunderland M. Communication between people with schizophrenia and their medical professionals: a participatory research project. Qualitative Health Research, 2004, 1494), 562-577.
Telford R, Faulkner A. Learning about service user involvement in mental health research. Journal of Mental Health, 2004, 3/6(549-559).
Townend M, Braithwaite T. Mental health research - the value of user involvement. Journal of Mental Health, April 2002, 11/2(117-119).
Trivedi, P, Wykes T. From passive subjects to equal partners: Qualitative review of user involvement in research. British Journal of Psychiatry, 2002, 181/6(468-472).
Truman C, Raine, P. Involving users in evaluation: the social relations of user participation in health research. Critical Public Health, 2001, 11/(215-229).
Truman, C. & Raine, P. 2002. Experience and meaning of user involvement: some explorations from a community mental health project. Health & Social Care in the Community, 10, (3) 136-143.
Vander Stoep A, Williams M, Jones R, Green L, Trupin E. Families as full research partners: what's in it for us? Journal of Behavioral Health Services & Research, 1999, 26/3(329-44).
Walsh J, Boyle J. Improving Acute Psychiatric Hospital Services According to Inpatient Experiences. A User-Led Piece of Research as a Means to Empowerment. Issues in Mental Health Nursing 2009, 30(1), 31-38.
Wykes T. Blue skies in the Journal of Mental Health? Consumers in research. The Journal of Mental Health, 2003, 12(1), 1-6.

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