Patient and Public Involvement in Research: Suggested ...
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Patient and Public Involvement in Health and Social Care Research: A Bibliography
Compiled by Dr Jonathan Boote, Research Fellow,
NIHR Research Design Service for Yorkshire and the Humber
Last revised on 07/11/2011
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INTRODUCTION AND SCOPE OF THE BIBLIOGRAPHY
This bibliography is intended to provide readers with a guide to the literature published in English on patient and public involvement (PPI) in health and social care research. INVOLVE, the body responsible for promoting patient and public involvement in research in England, defines ‘involvement’ as:
“an active partnership between the public and researchers in the research process, rather than the use of people as the ‘subjects’ of research. Active involvement may take the form of consultation, collaboration or user control. Many people define public involvement in research as doing research ‘with’ or ‘by’ the public, rather than ‘to’, ‘about’ or ‘for’ the public. This would include, for example, public involvement in advising on a research project, assisting in the design of a project, or in carrying out the research”.
This bibliography provides details on policy documents and guidance on patient and public involvement, as well book chapters, books and peer-reviewed papers on aspects of patient and public involvement in health and social care research. It should be noted that different terms are used for ‘patient and public’ in the literature: other terms used are ‘consumer, ‘user’, ‘service user’, ‘client’ ‘community’ and ‘lay’. The bibliography focuses exclusively on PPI in health and social care research. As such, papers that focus on PPI in service development and clinical audit have been excluded, as have papers that focus on issues relating to the involvement of people in research in areas other than health and social care.
The bibliography is divided into four parts: (1) policy documents, reports and guides; (2) book chapters; (3) books; and (4) peer-reviewed journal articles. Many of the reports featured in this bibliography can be downloaded from the Internet: where appropriate, therefore, hyperlinks have been provided. Peer-reviewed journal articles have been thematically subdivided into the following sections.
• General introductory papers on PPI in health and social care research
• PPI in identification of research questions and research prioritisation
• PPI in research design and protocol development
• PPI in peer review of research proposals and funding decisions
• PPI in medical device/intervention development
• Involvement of older people in health and social care research
• Involvement of young people and parents in health and social care research
• Involvement of people with learning difficulties in health and social care research
• Involvement of people with mental health problems in health and social care research
• Involvement of people with cancer in health and social care research
• PPI in research advisory groups and other committees
• PPI in data collection
• PPI in analysing and interpreting data
• PPI in secondary research and health technology assessment
• Reflections on and examples of user-led health and social care research
• Discussion papers on participatory research, action research or community-based methods in health and social care research
• Health or social care research using participatory or action research methods, or community-based methods
Peer-reviewed journal articles are only listed once in this bibliography. As can be surmised from the above thematic list, there were occasions when a paper could have been placed in more than thematic category. The compiler’s judgement was used in allocating each paper to the theme thought most appropriate. Readers may disagree on occasions as to the thematic placing of a certain paper.
DATABASES INITIALLY SEARCHED AND SEARCH TERMS USED
A search was undertaken in January 2009 by Information Resources, School of Health and Related Research, University of Sheffield, of the following databases: PsycINFO, MEDLINE, CINAHL, EMBASE and the invoNET database. All articles published in English on the topic of PPI in research from 1995 to the present day were searched for. Search terms included ’consumer’, ‘user’, ‘participant’, involvement’, ‘inclusion’, and ‘research’. Papers were included on the basis of title and, where it was available, the abstract. It is possible therefore that, in the case of reports of primary research, papers may have been excluded from the bibliography when detail about the public involvement in the study was provided in the main text of the paper only, and where PPI was not apparent from the title, detail of authorship and/or the study abstract.
Note that the database search identified almost exclusively peer-reviewed journal articles only. Books, book chapters, reports and guidance documents have been identified through the compiler’s personal knowledge of the field. Therefore, there are likely to be omissions to the list of books, book chapters, reports and guidance documents as the bibliography currently stands.
A detailed consideration of the searches undertaken – by Claire Beecroft, Information Specialist – Research Support, School of Health and Related Research, University of Sheffield
Searching for papers on PPI in research is complicated by the fact that currently none of the major health databases have a subject heading to describe PPI specifically in the research process. Thus for this search the following strategies were used:
Medline/CINAHL - these databases both have a subject heading called ‘consumer participation’- this is used for papers on participation in research, but also in decision-making etc, so it retrieves many thousands of results. To improve the accuracy of the results, limits were applied to restrict to papers which also included the word stems ‘involv*’ or ‘research*’ in the title or abstract, were written in English, had an abstract and were published from 1995 to the present date.
EMBASE - this database does not have a specific subject heading for consumer participation, so instead the word stems ‘consumer*’ or ‘user*’ where searched in the title or abstract, combined with the subject heading ‘Medical Research’. Again, this search was limited to papers that had an abstract, were written in English and were published from 1995 to the present date.
PsycInfo - for this database, a search based entirely on free-text terms was used as no relevant subject headings were identified. In this case the strategy searched for papers featuring the word stems ‘consumer*’ OR ‘user*’ within one word of the word stems ‘participat*’ OR ‘involv*’ OR ‘inclus*’ in the title or abstract. Again, this search was limited to papers that were written in English, had an abstract and were published from 1995 to the present date.
POLICY DOCUMENTS, REPORTS AND GUIDES ON PPI IN HEALTH AND SOCIAL CARE RESEARCH
Association of Medical Research Charities (AMRC) (2006), Briefing Paper: Using lay reviewers in the peer review process. London: AMRC.
Avalere Health (2007), Patient and Clinician Participation in Research Agenda Setting:
Lessons for Future Application, Washington, DC: Avalere Health LLC. Online at
(as of August 26, 2008).
Barnard A, Carter M, Britten N, Purtell R, Wyatt K, Ellis A. Summary of PC11 Report. An evaluation of consumer involvement in the London Primary Care Studies Programme. Peninsula Medical School.
Bastian H, (1994), The Power of Sharing Knowledge: Consumer Participation in the Cochrane Collaboration.
Baxter L, Thorne L, Mitchell A (2001), Small Voices Big Noises: Lay Involvement in Health Research: Lessons from Other Fields. Washington Singer Press.
Blaxter M (1995), Consumers and research in the NHS: an R&D contribution to consumer involvement in the NHS. London: Department of Health.
Beer, D., Keeble, P., MacInnes, D., Rees, D. Reid, L (2005), Development of a questionnaire to measure service user satisfaction within in-patient forensic services - The Forensic Satisfaction Scale. Liverpool: National Programme on Forensic Mental Health R&D
Beresford P. (2003), It’s our lives: a short theory of knowledge, distance and experience. Citizen Press in association with Shaping Our Lives.
Blackburn H., Hanley B. and Staley K. (2010) Turning the pyramid upside down: examples of public involvement in social care research, INVOLVE, Eastleigh.
Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S, Bayliss H (2010). The PIRICOM Study: A systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research. UK Clinical Research Collaboration.
Brown V, Cotterell C, Sitzia J, Richardson A, Kelley K, Willers R (2006). Evaluation of Consumer Research Panels in Cancer Research Networks. Final Report. An independent evaluation commissioned by the National Cancer Research Network and Macmillan Cancer Support.
Brownlie J, Anderson, S, Ormston (2006). Children as researchers. Edinburgh: Scottish Executive Education Department.
Bryant, L, Beckett, J (2006), The practicality and acceptability of an advocacy service in the emergency department for people attending following self-harm. Leeds: Academic Unit of Psychiatry, Leeds University.
Carr S, Coren, E (2006), Collection of examples of service user and carer participation in systematic reviews. London: SCIE.
CIHR (2007), CIHR Guidelines for Health Research Involving Aboriginal People, Ottawa:
Canadian Institutes of Health Research. Online at (as of August 31, 2008).
Corner J, Wright D, Foster C, Gunaratnam Y, Hopkinson J, Okamoto I (2006), The Macmillan Listening Study: Listening to the views of people affected by cancer about cancer research. London: Macmillan Cancer Support.
Davies R, Evans D (2010), Public involvement in research: how can organisations collaborate to improve involvement? University of the West of England.
Deloitte (2009), Enhancing Consumer Involvement in Medicines Health Technology Assessment: Final Report.
Dodson, J. and Baker, J. (1995) Time for Change - Local people becoming Researchers. London, Save the Children.
Faulkner, A. (2010) Changing our Worlds: Examples of user-controlled research in action. INVOLVE, Eastleigh.
Faulkner A. Beyond our expectations: A report of the experiences of involving service users in forensic mental health research.
Faulkner A (2004), Capturing the experiences of those involved in the TRUE project: A story of colliding worlds. Eastleigh: INVOLVE.
Faulkner A (2004), The Ethics of Survivor Research. Guidelines for the ethical conduct of research carried out by mental health service users and survivors. Bristol: The Policy Press.
Faulkner A, Morris, B. (2003), User involvement in forensic mental health research and development.
France, A. (2000) Youth Researching Youth: The triumph and Success peer research project, Leicester: National Youth Agency.
Gauvin FP (2008), Public Involvement in Health Technology Assessment Agencies: A Comparative Analysis of Canada, Denmark and the United Kingdom, PhD. McMaster University, Hamilton (Ontario, Canada).
Griffiths, K. M., H. Christensen, L. Barney, A. Jenkins, C. Kelly, and K. Pullen (2004), Promoting Consumer Participation in Mental Health Research: A National Workshop,
Canberra: Centre for Mental Health Research, The Australian National University. Online at (as of August 1, 2008).
Hailey D (2005), Consumer involvement in health technology assessment. Edmonton: Alberta Heritage Foundation for Medical Research. HTA Initiative #21.
Hanley, B. Research as empowerment? Report of a series of seminars organised by the Toronto Group York - The Homestead, 40 Water End, York YO30 6WP: Joseph Rowntree Foundation, 2005.
Harrison A. Getting the right medicines? Putting public interests at the heart of health-related research. London: King's Fund, 2003.
Hays and Kirby, P. (1998) Let's Spell it out: Peer Research on the Educational Support Needs of Young Refugees and Asylum Seekers living in Kensington and Chelsea. London: Save the Children.
Health Equality Europe (2008): A Guide to Understanding HTA for Patients and the Public.
Hovard L, Crowe S, Hussain N (2004) Effectiveness and Quality in User Involvement Projects (EQUIP) Final Report. NHS Public Health Resource Unit.
The HTAi Interest Group on Patient/Citizen Involvement (2009). Glossary for consumers and patients: a beginner’s guide to the words used in health technology assessment.
INVOLVE (2010) Payment for involvement: a guide to making payment to members of the public actively involved in NHS, public health and social care research.
INVOLVE (2010) Examples of training and support for public involvement in research:
sharing innovative practice workshop. INVOLVE, Eastleigh.
INVOLVE (2009) Senior Investigators and Public Involvement, INVOLVE, Eastleigh.
INVOLVE (2007), Good practice in active public involvement in research.
INVOLVE (2004), Getting started with involving the public in health research: an information sheet for researchers.
INVOLVE (2004), Involving the public in NHS, public health, and social care research: Briefing Notes for Researchers.
INVOLVE (2004), Full Consultation Document for Involving Marginalised and Vulnerable Groups in Research.
INVOLVE (2007) Public Involvement Pack – guidance for members of the public interested in getting involved in research:
Booklet 1 - so what is it all about?
Booklet 2 – getting started
Booklet 3 – finding out more
Booklet 4 – jargon buster -
INVOLVE (2006), Getting involved in research grant applications; guidelines for members of the public.
INVOLVE (2006), Peer reviewing research proposals: guidelines for members of the public.
INVOLVE (2006), Being a member of a commissioning board: guidelines for members of the public.
INVOLVE (2006), Public involvement in research grant applications: guidelines for commissioners.
INVOLVE (2006), Public involvement in peer reviewing research proposals: guidelines for commissioners.
INVOLVE (2006), Public involvement in commissioning boards: guidelines for commissioners.
INVOLVE (2006), Public involvement in research grant applications: guidelines for researchers.
INVOLVE. (2006), Guide to reimbursing and paying members of the public actively involved in research.
INVOLVE (2004), Report of a seminar on training for public involvement in research.
Ismail S (2009), Participatory Health Research. International Observatory on Health Research Systems, RAND Corporation.
Kellett, M. (2005) ‘Children as active researchers: a new research paradigm for the 21st century?’ Published online by ESRC National Centre for Research Methods, NCRM/003 ncrm.ac.uk/publications
Kirby P (2004), A Guide to Actively Involving Young People in Research: for researchers, research commissioners, and managers.
Kirby, P. (1999) Involving Young Researchers: how to enable young people to design and conduct research. York: York Publishing Services.
Kuruvilla, S. (2005), Civil Society Participation in Health Research and Policy: A Review of
Models, Mechanisms and Measures, London: Overseas Development Institute, Working
Paper 251. Online at (as of August 1, 2008).
Leamy N, Clough R (2006), How older people became researchers: training guidance and practice in action. York: Joseph Rowntree Foundation.
Lindow V, Morris J (1995). Section 5 of: Service user involvement; synthesis of findings and experience in the field of community care. York: York Publishing Services.
The Learning Difficulties Research Team with assistance from Bewley, C. & McCulloch, L (2006), Let me in - I'm a researcher! Getting involved in research. London: Department of Health.
Lockey R, Sitzia J, Gillingham T, Millyard J, Miller C, Ahmed S, Beales A, Bennett C, Parfoot S, Sigrist G and Sigrist J (2004), Full report: Training for service user involvement in health and social care research - a study of training provision and participants' experiences. Worthing and Southlands Hospitals NHS Trust.
Marias F. (2007), Toward the improvement of tuberculosis control and participatory research. London: Department of Primary Care and Social Medicine, Imperial College.
McKenzie A and Hanley B. (2009) Consumer and Community Participation in Health and Medical Research. A practical guide for health and medical research organisations. The University of Western Australia and The Telethon Institute for Child Health Research: Australia.
National Children's Bureau (2011), Young People in Research: How to involve us
Guidance for researchers from the PEAR young people’s public health group.
National Institute for Health Research (2008), Payment rates for public involvement.
Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database of Systematic Reviews, 01 September 2006, /3(0-), 1469493X
Oliver S, Clarke Jones L, Rees R, Milne R, Buchanan P, Gabbay J, Gyte G, Oakley A, Stein K (2004) Involving consumers in Research and Development agenda setting for the NHS: developing an evidence-based approach. Health Technology Assessment Monographs 8 (15):1-148.
Oliver S, Armes D, Gyte G. Evaluation of public influence on the NHS Health Technology Assessment Programme. June 2006. Social Science Research Unit, University of London.
Oliver S, Buchanan P (1997), Examples of lay involvement in research & development. EPPI-Centre, Institute of Education, University of London.
Oliver S, Gray, J. A bibliography of research reports about patients', clinicians' and researchers' priorities for research. London: James Lind Alliance,
Paterson C, (2003), Consumer involvement in research into complementary therapies. Bristol: Medical Research Council Health Service Research Collaboration.
Bridgelal Ram, M., Browne, N., Grocott, P. and Weir, H. (2005), Methodologies to Capture User Perspectives in Medical Device Development: A Survey of the Healthcare Literature, Multidisciplinary Assessment of Technologies Centre for Healthcare (MATCH) Report, available at: match.ac.uk
RAND Health (2008), “Out of the Ivory Tower, Into the Real World: examples of street-smart community health research,” RAND Health Research Highlights, Santa Monica, CA: RAND Health.
Sainsbury Centre for Mental Health. A review of service user involvement in prison mental health research. Dec. 2008.
Scott J (2008), Payment for involvement in research: helpful benefit rules and systems for avoiding benefit problems. INVOLVE
(2008)%20Payment%20for%20involvement%20in%20research%20INVOLVE.pdf
Shaw C,, Brady L-M, Davey C (2011), Guidelines for Research with Children and
Young People. National Children's Bureau.
Smith E, Manthorpe J, Brearley S, Ross F, Donovan S, Sitzia J, Beresford P (2005), User involvement in the design and undertaking of nursing, midwifery and health visiting research. London: National Co-ordinating Centre for NHS Service Delivery and Organisation.
Staley K (2009) Exploring Impact: Public involvement in NHS, public health and social care research. INVOLVE, Eastleigh.
Staley, K, Hanley B (2008) Scoping research priority setting (and the presence of PPI in priority setting) with UK clinical research organisations and funders. James Lind Alliance, Oxford.
Stewart R (2008), Social research and public involvement: colliding worlds? A report of the joint seminar by INVOLVE and ESRC National Centre for Research Methods. INVOLVE.
Tarpey, M. (2006), Why people get involved in health and social care research: a working paper. Eastleigh: INVOLVE.
Thorne L, Purtell R, Baxter L (2001), Knowing How - a Guide to Getting Involved in Research by Folk.Us of Exeter University.
Turner M, Beresford P (2005), What User Controlled Research means, and what it can do.
Turner M, Beresford P (2005), User Controlled Research: its meanings and potential. Full Report. Shaping Our Lives and the Centre for Citizen Participation, Brunel University.
TwoCan Associates. An evaluation of the process and impact of patient and public involvement in the advisory groups of the UK Clinical Research Collaboration. TwoCan Associates, January 2009.
TwoCan Associates for the UKCRC and NCRI (2010): Patient and public involvement (PPI) in research groups – Guidance for Chairs.
Viswanathan V, Eng E, Gartlehner G, Lohr K, Griffith D, Rhodes S, Samuel-Hodge C, Maty S, lux L, Webb L, Sutton S, Swinson T, Jackman A, Whitener L (2004), Community-based participatory research (CBPR): assessing the evidence. Evidence Report/Technology Assessment No. 99. Roackville, MD: Agency for Healthcare Research and Quality.
West, A. (1995) You're on your own: Young people's research on leaving care. London: Save the Children.
Worrall, S. (2000) Young People as Researchers: a learning resource pack. London: Save the Children.
BOOK CHAPTERS ON PPI IN HEALTH AND SOCIAL CARE RESEARCH
Abbott D (2010), Involving disabled children in research and consultations: issues, challenges and opportunities. In: Greener I, Holden C, Kilkey M (eds), Social Policy Review 22: Analysis and debate in Social Policy. Bristol: The Policy Press.
Bernard, W. T. (2000) ‘Participatory Research as Emancipatory Method: Challenges and Opportunities’, in D. Burton (ed.) Research Training for Social Scientists. London: Sage.
Cayton H, Hanley B (2001), Improving research through consumer involvement. In: M Baker, S Kirk (eds.), Research and development for the NHS. Oxford: Radcliffe Publishing Ltd.
Cooper C. Responding to unhappy childhoods in the UK: enhancing young people’s ‘well-being’ through participatory action research. In: Greener I, Holden C, Kilkey M (eds), Social Policy Review 22: Analysis and debate in Social Policy. Bristol: The Policy Press.
Cotterell P, Clarke P, Cawdrey D, Kapp J, Paine M, Wynn R. (2007) Becoming involved in research: A service user research advisory group. In Creative engagement in palliative care: New perspectives on user involvement. L. Jarrett, ed., Radcliffe Publishing, Oxford, pp. 101-115.
Entwistle V (2005), Involving service users in health services research. In: A Bowling, S Ebrahim (eds.), Handbook of health research methods: Investigation, measurement and analysis. Maidenhead: Open University Press.
Evans C, Fisher M (1999), Collaborative evaluation with service users; moving towards user-controlled research. In: I Shaw, J Lishman (eds.), Evaluation and Social Work practice. London: Sage.
Evans C, Fisher M (1999), User-controlled research and empowerment. In W Sherpa, L Wells (eds.), Empowerment practice in social work: developing richer conceptual foundations. Toronto: Canadian Scholars Press.
Evans I, Thornton H, Chalmers I (2006), Chapter 7. In Evans I, Thornton H, Chalmers. Testing treatments: better research for better healthcare. London: British Library.
Harding R, Whitfield G, Stllwell R (2010), Service users as peer research interviewers: why bother? In: Greener I, Holden C, Kilkey M (eds), Social Policy Review 22: Analysis and debate in Social Policy. Bristol: The Policy Press.
Hill S (2007), Involving the consumer in health research. In Saks M, Allsop J (eds.), Researching Health: Qualitative, Quantitative and Mixed Methods. London: Sage.
Hill, M. 1997. Participatory Research with Children. In Child and Family Social Work. Blackwell: London; pp171-183.
Jones A. 2004. Children and young people as researchers. In Doing Research with Children and Young People. Fraser S, Lewis V, Ding S, Kellett M, Robinson C (eds). The Open University/Sage: London; 113–130.
Kellett M, Ward B (2008) Children as active researchers: participation and power sharing. In: Moore, Shannon A. and Mitchell, Richard C. eds. Power, pedagogy and praxis: social justice in the globalized classroom. Critical issues in the future of learning and teaching (1). Rotterdam: Sense Publishers, pp. 91–104.
Kirby, P. (2001a) Involving Young People in Research in B. Franklin (Ed.) Handbook of Children's Rights, 2nd Edn. London: Routledge.
Mercer G. Emancipatory disability research. In: Barnes C, Oliver M, Barton L (eds.), Disability Studies Today. Cambridge: Blackwells, 2002.
Oliver S, Entwistle V, Hodnett E (2002) Roles for lay people in the implementation of health care research. In: Haines A, Donald A (eds) Getting research findings into practice (second edition). London: BMJ Publishing, pages 86-94.
Oliver S (2001) Making research more useful: Integrating different perspectives and different methods. In: Oliver S, Peersman G (eds) Useful research for effective health promotion. Buckingham: Open University Press, pages 167-179.
Oliver S. Users of health services: following their agenda. In: Hood S, Mayall B, Oliver S, eds. Critical issues in social research. Buckingham: Oxford University Press, 1999: 139-153.
Oliver S (2008) Public and Consumer Participation in Policy and research. In: Heggerson K, Quah S (eds) International Encyclopedia of Public Health. San Diego: Elsevier, 408-415.
Ramcharan, P. and Grant, G. 1994 ‘Setting one agenda for empowering persons with a disadvantage within the research process’, in M. Rioux and M. Bach (eds) 1994 Disability is not Measles: New Research Paradigms in Disability, Ontario: L’Institut Roeher.
Warren, S. (2000) Let's Do It Properly: inviting children to be researchers, in A. Lewis and G. Lindsay (Eds.) Researching Children's Perspectives. Buckingham: Open University Press.
Wilson, R, (2005), "You have to be pragmatic: methods, epistemology, and consumer involvement in research," in Burr, J, Nicolson, P, (eds) Researching Health Care Consumers: Critical Approaches, Basingstoke, Palgrave Macmillan.
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).
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PPI in identification of research questions and research prioritisation
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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.
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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).
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.
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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.
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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
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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
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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.
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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
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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.
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Coad J, Evans R. Reflections on Practical Approachesto Involving Children and Young People in the Data Analysis Process. Children & Society, 22, (2008). 41–52
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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.
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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.
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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
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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.
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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
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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).
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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.
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Truman C, Raine, P. Involving users in evaluation: the social relations of user participation in health research. Critical Public Health, 2001, 11/(215-229).
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
PPI in secondary research and health technology assessment
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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.
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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).
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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).
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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.
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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).
Faulkner A, Thomas P. User-led research and evidence-based medicine. British Journal of Psychiatry, 2002, 180, 1-3.
Gillard S, Stacey E. All talk: experiencing user-led research. A Life in the Day 2005, 9(2), 27-30.
Hounsell J, Owens C. User researchers in control. Mental Health Today, 2005, 29-32.
Pollock L. User-led research: who's asking? Mental Health Nursing, 2002, 22/1(17-18).
Yates BD, McEwan C, Eadie D. How to involve hard to reach groups: a consumer-led project with lay carers of people with advanced HIV infection. Public Health, 1997, 111/5(297-303).
Discussion papers on participatory research, action research or community-based methods in health and social care research
Abelson J, Forest P, Eyles J, Casebeer A, Martin E, Mackean G. Examining the role of context in the implementation of a deliberative public participation experiment: results from a Canadian comparative study. Social Science & Medicine, 2007, 64/10(2115-2128).
Abelson J, Forest PG, Eyles J, Smith P, Martin E, Gauvin FP. Deliberations about deliberative methods: issues in the design and evaluation of public participation processes Social Science & Medicine, 2003, 57/2(239-51).
Adams R, McCullough A. The urban practitioner and participation in research within a streetwork context. Community, Work and Family, 2003, 6(3), 269-287.
Ahmed SM, Palermo A-G S. Community Engagement in Research: Frameworks for Education and Peer Review. American Journal of Public Health, 2010, 100, (8) 1380-1387.
Benoit, C., Jansson, M., Millar, A., & Phillips, R. (2005). Community-academic research on hard-to-reach populations: Benefits and challenges. Qualitative Health Research,15, 263-282.
Bidwell, D. 2009. Is Community-Based Participatory Research Postnormal Science? Science Technology & Human Values, 34, (6) 741-761.
Bogart, L.A. & Uyeda, K. 2009. Community-Based Participatory Research: Partnering With Communities for Effective and Sustainable Behavioral Health Interventions. Health Psychology, 28, (4) 391-393.
Buhler C. Empowered participation of users with disabilities in R&D projects. International Journal of Human-Computer Studies, October 2001, 55/4(645-659).
Caine, K.J., Salomons, M.J., & Simmons, D. 2007. Partnerships for social change in the Canadian North: Revisiting the insider-outsider dialectic. Development and Change, 38, (3) 447-471.
Campbell M, Copeland B, Tate B. Taking the standpoint of people with disabilities in research: experiences with participation. Canadian Journal of Rehabilitation, 1998, 12/2(95-104).
Carey, T.S., Howard, D.L., Goldmon, M., Roberson, J.T., Godley, P.A., & Ammerman, A. 2005. Developing effective interuniversity partnerships and community-based research to address health disparities. Academic Medicine, 80, (11) 1039-1045.
Cargo M, Delormier T, Levesque L, Horn-Miller K, McComber A, Macaulay AC. Can the democratic ideal of participatory research be achieved? An inside look at an academic-indigenous community partnership. Health Education Research, 2008, 23/5(904-14).
Cargo M, Mercer SL. The value and challenges of participatory research: strengthening its practice. Annual Review of Public Health, 2008, 29/(325-50).
Cash RA. What is owed to the community before, during and following research: an ethical dialogue. Eastern Mediterranean Health Journal, 2006, 12 Suppl 1/(S37-41).
Catalani, C. & Minkler, M. 2010. Photovoice: A Review of the Literature in Health and Public Health. Health Education & Behavior, 37, (3) 424-451
Cave, A.J. & Ramsden, V.R. 2002. Hypothesis: The research page - Participatory action research. Canadian Family Physician, 48, 1671-1672
Chappell AL. Emergence of participatory methodology in learning difficulty research: understanding the context. British Journal of Learning Disabilities, 2000, 28/1(38-43).
Chen DT, Jones L, Gelberg L. Ethics of clinical research within a community-academic partnered participatory framework. Ethnicity & Disease, 2006, 16/1 Suppl 1(S118-35).
Chiu LF. Engaging communities in health intervention research/practice. Critical Public Health, 2008, 18/2(151-159).
Christopher S, Watts V, McCormick AKHG, Young S. Building and maintaining trust in a community-based participatory research partnership. American Journal of Public Health, 2008, 98 (8), 1398-1406.
Cornwall A, Jewkes R. What is participatory research? Social Science & Medicine, 1995, 41/12(1667-76).
Costa J, Herbert C, Macaulay AC. Participatory research in primary care. Journal of Interprofessional Care, 2004 18/4(451-3).
Dickert N, Sugarman J. Ethical goals of community consultation in research. American Journal of Public Health, 2005, 95/7(1123-7).
Dickert, N.W. & Sugarman, J. 2006. Community consultation: Not the problem - an important part of the solution. American Journal of Bioethics, 6, (3) 26-28
Dickert, N.W. & Sugarman, J. 2007. Getting the ethics right regarding research in the emergency setting: Lessons from the PolyHeme study.
Dickinson, W.P. & Rosenthal, M.P. 2002. Community research partnerships and social advocacy to accomplish change. Family Medicine, 34, (7) 536.
Dickson G, Green K. participatory action research: lessons learned with Aboriginal grandmothers. Health Care for Women International, 2001, 22(5), 471-482.
Downey, L.H., Anyaegbunam, C., & Scutchfield, F.D. 2009. Dialogue to Deliberation: Expanding the Empowerment Education Model. American Journal of Health Behavior, 33, (1) 26-36.
El Ansari W, Phillips CJ, Zwi AB. Narrowing the gap between academic professional wisdom and community lay knowledge: perceptions from partnerships. Public Health, 2002, 116/3(151-9).
Faridi Z, Grunbaum JA, Gray BS, Franks A, Simoes E. Community-based participatory research: necessary next steps. Preventing Chronic Disease, 2007, 4/3(A70).
Fisher PA, Ball TJ. Balancing empiricism and local cultural knowledge in the design of prevention research. Journal of Urban Health, .005, 82/2 Suppl 3(iii44-55).
Fleischman AR. Community engagement in urban health research. Journal of Urban Health, 2007, 84/4(469-71).
Flicker S, Savan B, Kolenda B, Mildenberger M. A snapshot of community-based research in Canada: Who? What? Why? How? Health Education Research, 2008, 23/1(106-14).
Flicker, S., Travers, R., Guta, A., McDonald, S., & Meagher, A. 2007. Ethical dilemmas in community-based participatory research: Recommendations for institutional review boards. Journal of Urban Health-Bulletin of the New York Academy of Medicine, 84, (4) 478-493
George MA, Daniel M, Green LW. Appraising and funding participatory research in health promotion. International Quarterly of Community Health Education, 2006, 26/2(171-87).
Graham K, Chandler-Coutts M. Community action research: who does what to whom and why? Lessons learned from local prevention efforts (international experiences). Substance Use & Misuse, 2000, 35/1-2(87-110).
Green, L., Daniel, M., & Novick, L. 2001. Partnerships and coalitions for community-based research. Public Health Reports, 116, 20-31
Green, L.W. 2004. Ethics and community-based participatory research: Commentary on Minkler. Health Education & Behavior , 31, (6) 698-701
Hagey RS. The use and abuse of participatory action research. Chronic Diseases in Canada, 1997, 18/1(1-4).
Hanks CA. Community empowerment: a partnership approach to public health program implementation. Policy, Politics & Nursing Practice, 2006, 7/4(297-306).
Heron, J., & Reason, P. (1997). A participatory inquiry paradigm. Qualitative Inquiry, 3(3), 274-294.
Horowitz, C.R., Robinson, M., & Seifer, S. 2009. Community-Based Participatory Research From the Margin to the Mainstream Are Researchers Prepared? Circulation, 119, (19) 2633-2642.
Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: assessing partnership approaches to improve public health. Annual Review of Public Health 1998;19:173–202.
Israel BA, Schulz AJ, Parker EA, Becker AB. Community-based participatory research: Policy recommendations for promoting a partnership approach in health research. Education for Health 2001;14:182–197.
Johnston, C. & Woody, S. 2008. Ethical challenges in community-based research: Introduction to the series. Clinical Psychology-Science and Practice, 15, (2) 115-117
Jones L, Wells K. Strategies for academic and clinician engagement in community-participatory partnered research. JAMA, 2007, 297/4(407-10).
Justo, L. 2004. Participatory research: A way to reduce vulnerability. American Journal of Bioethics, 4, (3) 67-68
Kelley BR. Community-based research: a tool for community empowerment and student learning. Journal of Nursing Education, 1995, 34/8(384-6).
Katz DL. Representing your community in community-based participatory research: differences made and measured Preventing Chronic Disease, 2004, 1/1(A12).
Kelly, P.J. 2005. Practical suggestions for community interventions using participatory action research. Public Health Nursing, 22, (1) 65-73
Kennedy, C., Vogel, A., Goldberg-Freeman, C., Kass, N., & Farfel, M. 2009. Faculty Perspectives on Community-Based Research: "I See This Still As A Journey". Journal of Empirical Research on Human Research Ethics, 4, (2) 3-16
Khanlou, N. & Peter, E. 2005. Participatory action research: considerations for ethical review. Social Science & Medicine, 60, (10) 2333-2340.
Kone A, Sullivan M, Senturia KD, Chrisman NJ, Ciske SJ, Krieger JW. Improving collaboration between researchers and communities. Public Health Reports, 2000, 115/2-3(243-8).
Lasker RD, Weiss ES. Broadening participation in community problem solving: A multidisciplinary model to support collaborative practice and research. Journal of Urban Health 2003;80:14–47. discussion 48–60.
Lax W, Galvin K. Reflections on a community action research project: interprofessional issues and methodological problems. Journal of Clinical Nursing, 2002, 11/3(376-86).
Letts L. Occupational therapy and participatory research: a partnership worth pursuing. American Journal of Occupational Therapy, 01 January 2003, 57/1(77-87).
Leykum, L.K., Pugh, J.A., Lanham, H.J., Harmon, J., & McDaniel, R.R. 2009. Implementation research design: integrating participatory action research into randomized controlled trials. Implementation Science, 4, doi:10.1186/1748-5908-4-69.
Leung MW, Yen IH, Minkler M. Community based participatory research: a promising approach for increasing epidemiology's relevance in the 21st century. International Journal of Epidemiology, 2004, 33/3(499-506).
Lindsey, E., Sheilds, L., & Stajduhar, K. 1999. Creating effective nursing partnerships: relating community development to participatory action research. Journal of Advanced Nursing, 29, (5) 1238-1245.
Litt IF. Research with, not on, adolescents: community-based participatory research. Journal of Adolescent Health, 2003, 33/5(315-6).
Lofman P, Pelkonen M, Pietila. A Ethical issues in participatory action research. Scandinavian Journal of Caring Sciences, 2004, 8/3(333-340).
Macaulay AC. Promoting participatory research by family physicians. Annals of Family Medicine, 2007, 5/6(557-60).
Macaulay, A.C., Gibson, N., Freeman, W.L., Commanda, L.E., Mccabe, M.L., Robbins, C.M., & Twohig, P.L. 2001. The community's voice in research. Canadian Medical Association Journal, 164, (12) 1661-1662.
Macaulay AC, Nutting PA. Moving the frontiers forward: incorporating community-based participatory research into practice-based research networks. Annals of Family Medicine, 2006, 4/1(4-7).
Macaulay AC, Ryan JG. Community needs assessment and development using the participatory research model. Annals of Family Medicine, 2003, 1/3(183-4).
Maiter, S., Simich, L., Jacobson, N., & Wise, J. 2008. Reciprocity: An ethic for community-based participatory action research. Action Research, 6, (3) 305-325.
Majdzadeh, R., Forouzan, A.S., Pourmalek, F., & Malekafzali, H. 2009. Community-Based Participatory Research; an approach to Deal with Social Determinants of Health. Iranian Journal of Public Health, 38, 50-53.
Malekaftali, H., Forouzan, A., Eftekhari, M.B., Farahani, M.A., & Vishteh, H.R.K. 2009. Community-Based Participatory Research: How Do Academicians Rate Success in Iran? Iranian Journal of Public Health, 38, 54-57.
Malone, R.E., Yerger, V.B., McGruder, C., & Froelicher, E. 2006. "It's like Tuskegee in reverse": A case study of ethical tensions in institutional review board review of community-based participatory research. American Journal of Public Health, 96, (11) 1914-1919.
Marincowitz, G.J. 2003. How to use participatory action research in primary care. Family Practice, 20, (5) 595-600.
Martin, N., Garcia, A.C., & Leipert, B. 2010. Photovoice and Its Potential Use In Nutrition and Dietetic Research. Canadian Journal of Dietetic Practice and Research, 71, (2) 93-97.
Minkler M. Ethical challenges for the "outside" researcher in community-based participatory research. Health Education & Behavior, 2004, 31/6(684-97).
Minkler M. Using Participatory Action Research to build Healthy Communities. Public Health Reports, March 2000, 115/2-3(191-7).
Minkler M. Community-based research partnerships: challenges and opportunities. Journal of Urban Health, June 2005, 82/2 Suppl 2(ii3-12).
Mitchell, T.L. & Baker, E. 2005. Community-building versus career-building research: The challenges, risks, and responsibilities of conducting research with Aboriginal and Native American communities. Journal of Cancer Education, 20, (1) 41-46.
Mongeau S, Champagne M, Liben S. Participatory research in pediatric palliative care: benefits and challenges. Journal of Palliative Care, 2007, 23/1(5-13).
Moore, D.E., Niebler, S.E., Schlundt, D.G., & Pichert, J.W. 2007. A conceptual model for using action inquiry technologies to address disparities in depression. Journal of Continuing Education in the Health Professions, 27, S55-S64.
Moreno-John G, Fleming C, Ford ME, Lichtenberg P, Mangione CM, Perez-Stable EJ, Tilley B, Washington OG, Carrasquillo O. Mentoring in community-based participatory research: the RCMAR experience Ethnicity & Disease, 2007, 17/1 Suppl 1(S33-43).
Myser C. Community-based participatory research in United States bioethics: steps toward more democratic theory and policy. American Journal of Bioethics, 2004, 4/2(67-8).
Naylor PJ, Wharf-Higgins J, Blair L, Green L, O'Connor B. Evaluating the participatory process in a community-based heart health project. Social Science & Medicine, 2002, 55/7(1173-87).
Newell, CJ, South J. Participating in community research: exploring the experiences of lay
researchers in Bradford. Community, Work & Family, 2009, 12:1, 75-89.
Niba M, Green J. The impact of participatory and non-participatory evaluations on meeting project objectives. African Journal of AIDS Research, 2005, 492), 103-113.
Northway R. Finding out together: lessons in participatory research for the learning disability nurse. Mental Health & Learning Disabilities Care, 2000, 3/7(229-232).
Nyden P. Academic incentives for faculty participation in community-based participatory research. Journal of General Internal Medicine, July 2003, 18/7(576-85).
Olshansky E, Sacco D, Braxter B, Dodge P, Hughes E, Ondeck M, Stubbs ML, Upvall MJ. Participatory action research to understand and reduce health disparities. Nursing Outlook, 2005, 53/3(121-6).
Oscos-Sanchez MA, Lesser J, Kelly P. Cultural competence: a critical facilitator of success in community-based participatory action research. Issues in Mental Health Nursing, 2008, 29/2(197-200).
O'Toole TP, Aaron KF, Chin MH, Horowitz C, Tyson F. Community-based participatory research: opportunities, challenges, and the need for a common language. Journal of General Internal Medicine, 2003, 18/7(592-4).
Partin MR. A challenging but critical endeavor: balancing responsiveness and rigor in community-based participatory research Health Education & Behavior, 2006, 33/5(574-7; discussion 578-9).
Plumb M, Price W, Kavanaugh-Lynch MH. Funding community-based participatory research: lessons learned. Journal of Interprofessional Care, 2004, 18/4(428-39).
Pollard N, Sakellariou D. Operationalizing community participation in community-based rehabilitation: exploring the factors. Disability & Rehabilitation, 2008, 30/1(62-70).
Postma, J. 2008. Balancing power among academic and community partners: The case of El Proyecto Bienestar. Journal of Empirical Research on Human Research Ethics, 3, (2) 17-32.
Powers JL, Tiffany JS. Engaging Youth in Participatory Research and Evaluation. J Public Health Management Practice, 2006, November(Suppl), S79–S87.
Pullmann, M.D. 2009. Participatory Research in Systems of Care for Children's Mental Health. American Journal of Community Psychology, 44, (1-2) 43-53.
Rains JW, Ray DW. Participatory action research for community health promotion. Public Health Nursing, August 1995, 12/4(256-61).
Resnick MD. Challenges and prospects for community-partnered research. Journal of Adolescent Health, June 2007, 40/6(487-8).
Resnik, D.B. & Kennedy, C.E. 2010. Balancing Scientific and Community Interests in Community-Based Participatory Research. Accountability in Research-Policies and Quality Assurance, 17, (4) 198-210.
Rhodes, S.D., Malow, R.M., & Jolly, C. 2010. Community-Based Participatory Research: A New and Not-So-New Approach to Hiv/Aids Prevention, Care, and Treatment. Aids Education and Prevention, 22, (3) 173-183.
Richardson M. Participatory research methods: people with learning disabilities. British Journal of Nursing, 23 October 1997, 6/19(1114-1121).
Richardson, L.D., Quest, T.E., & Birnbaum, S. 2005. Communicating with communities about emergency research. Academic Emergency Medicine, 12, (11) 1064-1070.
Richardson, L.D., Rhodes, R., Ragin, D.F., & Wilets, I. 2006. The role of community consultation in the ethical conduct of research without consent. American Journal of Bioethics, 6, (3) 33-35.
Salmon, A. (2007) Walking the talk: How participatory interview methods can democratize research. Qualitative Health Research, 17, 982-993.
Schmittdiel, J.A., Grumbach, K., & Selby, J.V. 2010. System-Based Participatory Research in Health Care: An Approach for Sustainable Translational Research and Quality Improvement. Annals of Family Medicine, 8, (3) 256-259.
Schulz AJ, Krieger J, Galea S. Addressing social determinants of health: community-based participatory approaches to research and practice. Health Education & Behavior, June 2002, 29/3(287-95),
Seifer SD, Calleson DC. Health professional faculty perspectives on community-based research: implications for policy and practice. Journal of Interprofessional Care, 01 November 2004, 18/4(416-427).
Shalowitz, M.U., Isacco, A., Barquin, N., Clark-Kauffman, E., Delger, P., Nelson, D., Quinn, A., & Wagenaar, K.A. 2009. Community-Based Participatory Research: A Review of the Literature With Strategies for Community Engagement. Journal of Developmental and Behavioral Pediatrics , 30, (4) 350-361.
Sharp, R.R. & Foster, M. 2000. Involving study populations in the review of genetic research. Journal of Law Medicine & Ethics, 28, (1) 41-+.
Sheehan, M. 2006. Is the community consultation requirement necessary? American Journal of Bioethics, 6, (3) 38-40.
Sheilds L, Brunt JH. Connecting for health: researching with community. Canadian Journal of Cardiovascular Nursing, 01 May 2003, 13/2(8-13).
Shiu-Thornton, S. 2003. Addressing cultural competency in research: Integrating a community-based participatory research approach. Alcoholism-Clinical and Experimental Research, 27, (8) 1361-1364.
Silverstein, M., Banks, M., Fish, S., & Bauchner, H. 2008. Variability in institutional approaches to ethics review of community-based research conducted in collaboration with unaffiliated organizations. Journal of Empirical Research on Human Research Ethics, 3, (2) 69-76.
Simon, C., Mosavel, M., & van Stade, D. 2007. Ethical challenges in the design and conduct of locally relevant international health research. Social Science & Medicine, 64, (9) 1960-1969.
Simon, C. & Mosavel, M. 2010. Community Members as Recruiters of Human Subjects: Ethical Considerations. American Journal of Bioethics, 10, (3) 3-11.
Smikowski, J., Dewane, S., Johnson, M.E., Brems, C., Bruss, C., & Roberts, L.W. 2009. Community-Based Participatory Research for Improved Mental Health. Ethics & Behavior, 19, (6) 461-478.
Stiffman A, Freedenthal S, Brown E, Ostmann E, Hibbeler P. Field Research with underserved minorities: the ideal and the real. Journal of Urban health, 2005, 82(2, suppl. 3, iii56-iii66.
Street, J., Baum, F., & Anderson, I. 2007. Developing a collaborative research system for Aboriginal health. Australian and New Zealand Journal of Public Health, 31, (4) 372-378.
Story, L., Hinton, A., & Wyatt, S.B. 2010. The role of community health advisors in community-based participatory research. Nursing Ethics, 17, (1) 117-126.
Stuttaford M, Coe C. The "learning" component of participatory learning and action in health research: reflections from a local Sure Start evaluation. Qualitative Health Research, 01 December 2007, 17/10(1351-1360).
Suarez-Balcazar Y, Harper GW, Lewis R. An interactive and contextual model of community-university collaborations for research and action. Health Education & Behavior, 2005, 32/1(84-101).
Taylor J, Wilkinson D, Cheers B. Is it consumer or community participation? Examining the links between 'community' and 'participation'. Health Sociology Review, 2006, 15/1(38-47).
Teram E, Schachter CL, Stalker CA. The case for integrating grounded theory and participatory action research: empowering clients to inform professional practice. Qualitative Health Research, 2005, 15/8(1129-1140).
Thomas N, O’Kane C. 1998. The ethics of participatory research with children. Children & Society 12:336–348.
Thompson, B., Ondelacy, S., Godina, R., & Coronado, G.D. 2010. A Small Grants Program to Involve Communities in Research. Journal of Community Health, 35, (3) 294-301.
Tindana, P.O., Singh, J.A., Tracy, C.S., Upshur, R.E.G., Daar, A.S., Singer, P.A., Frohlich, J., & Lavery, J.V. 2007. Grand challenges in global health: Community engagement in research in developing countries. PLoS Medicine, 4, (9) 1451-1455.
Wallerstein, N. 1999. Power between evaluator and community: research relationships within New Mexico's healthier communities. Social Science & Medicine, 49, (1) 39-53.
Wallwork E. Ethical analysis of research partnerships with communities. Kennedy Institute of Ethics Journal, March 2008, 18/1(57-85).
Wang CC. Photovoice: a participatory action research strategy applied to women's health. Journal of Women's Health, 1999, 8/2(185-192).
Washington WN. Collaborative/Participatory research. Journal of Health Care for the Poor & Underserved, 2004, 15/1(18-29).
Weglicki LS, Rice VH, Hammad A. Science and the community: a collaborative model for integration of research within the community. Ethnicity & Disease, 2005, 15/1 Suppl 1(S1-35-8).
Westhues A, Ochocka J, Jacobson N, Simich L, Maiter S, Janzen R, Fleras A, Developing theory from complexity: reflections on a collaborative mixed method participatory action research study. Qualitative Health Research, 01 May 2008, 18/5(701-717).
White GW, Suchowierska M, Campbell M Developing and systematically implementing participatory action research. Archives of Physical Medicine & Rehabilitation, 2004, 85/4.
Wright MT, Roche B, von Unger H, Block M, Gardner B. A call for an International Collaboration on Participatory Research for Health. Health Promotion International, 2009, 25(1), 115-122.
Wright MT, Gardner B, Roche B, von Unger H, Ainlay C. Building an International Collaboration on Participatory Health Research. Progress in Community Health Partnerships: Research, Education, and Action 2010, 4(1), 31-36.
Health or social care research using participatory or action research methods, or community-based methods
Ajayi, I.O., Oladepo, O., Falade, C.O., Bamgboye, E.A., & Kale, O. 2009. The development of a treatment guideline for childhood malaria in rural Southwest Nigeria using participatory approach. Patient Education and Counseling, 75, (2) 227-237
Allamani A, Casswell S, Graham K, Holder HD, Holmila M, Larsson S, Nygaard P. Introduction: community action research and the prevention of alcohol problems at the local level. Substance Use & Misuse, J 2000, 35/1-2(1-10).
Allen J, Mohatt G, Rasmus S, Hazel K, Thomas L, Lindley S. The tools to understand: community as co-researcher on culture-specific protective factors for Alaska natives. Journal of Prevention and Intervention in the Community, 2006, 32(1-2), 41-60.
Allen-Meares, P., Hudgins, C.A., Engberg, M.E., & Lessnau, B. 2005. Using a collaboratory model to translate social work research into practice and policy. Research on Social Work Practice, 15, (1) 29-40.
Andrews JO, Bentley G, Crawford S, Pretlow L, Tingen MS. Using community-based participatory research to develop a culturally sensitive smoking cessation intervention with public housing neighborhoods. Ethnicity & Disease, 2007, 17/2(331-7).
Angell K, Krehna M, McCoy R, Donnelly P, Turner-Cobb J, Graddy K, Kraemer H, Koopman C. Psychosocial intervention for rural women with breast cancer: The Sierra-
Stanford Partnership. Journal of Internal Medicine, 2003, 18, 499-507.
Anthony, J.S., Lee, R.C., Barry, D.G., & Kappesser, M. 2010. Recruiting and Keeping African American Women in an Ethnographic Study of Pregnancy: The Community-Based Partnership Model. Field Methods, 22, (2) 125-132.
Arcury, T.A., Austin, C.K., Quandt, S.A., & Saavedra, R. 1999. Enhancing community participation in intervention research: Farmworkers and agricultural chemicals in North Carolina. Health Education & Behavior, 26, (4) 563-578
Arcury, T.A., Quandt, S.A., & Dearry, A. 2001. Farmworker pesticide exposure and community-eased participation research: Rationale and practical applications. Environmental Health Perspectives, 109, 429-434.
Austin, W., Goble, E., Strang, V., Mitchell, A., Thompson, E., Lantz, H., Balt, L., Lemermeyer, G., & Vass, K. 2009. Supporting Relationships Between Family and Staff in Continuing Care Settings. Journal of Family Nursing, 15, (3) 360-383.
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