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Introduction and scope of the bibliography


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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

http://copr.nih.gov/media/pcrp_white.pdf (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. http://www.invo.org.uk/pdfs/Summary_of_PC11Report1.pdf
Bastian H, (1994), The Power of Sharing Knowledge: Consumer Participation in the Cochrane Collaboration.

http://consumers.cochrane.org/sites/consumers.cochrane.org/files/BastianPowerofSharingKnowledge_1994.pdf
Baxter L, Thorne L, Mitchell A (2001), Small Voices Big Noises: Lay Involvement in Health Research: Lessons from Other Fields. Washington Singer Press.

http://www.invo.org.uk/pdfs/small_voices.pdf
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. http://www.ukcrc.org/index.aspx?o=3233
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. http://www.sxrc.nhs.uk/NR/rdonlyres/164B4AA2-D4C0-4E38-8974-1553BD6E21D1/0/CRPvF20061122FullReport.pdf
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.

http://www.leeds.ac.uk/hsphr/psychiatry/research/advocacy_service.htm

Carr S, Coren, E (2006), Collection of examples of service user and carer participation in systematic reviews. London: SCIE.



http://www.scie.org.uk/publications/researchresources/rr02.pdf
CIHR (2007), CIHR Guidelines for Health Research Involving Aboriginal People, Ottawa:

Canadian Institutes of Health Research. Online at http://www.cihrirsc.gc.ca/e/documents/ethics_aboriginal_guidelines_e.pdf (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.

http://hls.uwe.ac.uk/suci/Data/Sites/1/public_involvement_in_research_report_april_2010_final..pdf
Deloitte (2009), Enhancing Consumer Involvement in Medicines Health Technology Assessment: Final Report. http://www.deloitte.com/assets/Dcom-Australia/Local%20Assets/Documents/Industries/Deloitte_Consumer%20Involvement%20in%20HTA%20Report.pdf
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.

http://www.invo.org.uk/invonetresources/Beyond%20our%20Expectations%20final.doc
Faulkner A (2004), Capturing the experiences of those involved in the TRUE project: A story of colliding worlds. Eastleigh: INVOLVE.

http://www.invo.org.uk/pdfs/Colliding%20Worlds.pdf
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. http://www.nfmhp.org.uk/pdf/UserInvolvement.pdf
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 http://www.ehub.anu.edu.au/pdf/consumerworkshopreport.pdf (as of August 1, 2008).


Hailey D (2005), Consumer involvement in health technology assessment. Edmonton: Alberta Heritage Foundation for Medical Research. HTA Initiative #21. http://www.ihe.ca/documents/HTA-FR21.pdf
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. http://www.htai.org/index.php?id=85&type=0&jumpurl=fileadmin%2FHTAi_Files%2FISG%2FPatientInvolvement%2FEffectiveInvolvement%2FHEEGuideToHTAforPatientsEnglish.pdf&juSecure=1&locationData=85%3Att_content%3A690&juHash=2221bae128

Hovard L, Crowe S, Hussain N (2004) Effectiveness and Quality in User Involvement Projects (EQUIP) Final Report. NHS Public Health Resource Unit.



http://www.invo.org.uk/pdfs/EQUIP_Report.pdf

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