Introduction and scope of the bibliography
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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.http://www.htai.org/index.php?id=85&type=0&jumpurl=fileadmin%2FHTAi_Files%2FISG%2FPatientInvolvement%2FGlossary%2FHTAiPatientAndConsumerGlossaryOctober2009_01.pdf&juSecure=1&locationData=85%3Att_content%3A981&juHash=1e8c0089e2 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. http://www.invo.org.uk/pdfs/PaymentGuideWEB240510.pdf 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. http://www.invo.org.uk/pdfs/SIFINALPAPERNOV2009101109.pdf INVOLVE (2007), Good practice in active public involvement in research. http://www.invo.org.uk/pdfs/GoodPracticeD3.pdf INVOLVE (2004), Getting started with involving the public in health research: an information sheet for researchers. http://www.invo.org.uk/pdfs/Informationsheet_on_involvement_in_public_health_research.pdf INVOLVE (2004), Involving the public in NHS, public health, and social care research: Briefing Notes for Researchers. http://www.invo.org.uk/pdfs/Briefing%20Note%20Final.dat.pdf INVOLVE (2004), Full Consultation Document for Involving Marginalised and Vulnerable Groups in Research. http://www.invo.org.uk/pdfs/Involving%20Marginalised%20and%20VullGroups%20in%20Researchver2.pdf 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? http://www.invo.org.uk/pdfs/PIP1whatisitallabout.pdf Booklet 2 – getting started http://www.invo.org.uk/pdfs/PIP2gettingstarted.pdf Booklet 3 – finding out more http://www.invo.org.uk/pdfs/PIP3findingoutmore.pdf Booklet 4 – jargon buster - http://www.invo.org.uk/pdfs/PIP44jargonbuster.pdf
Kirby P (2004), A Guide to Actively Involving Young People in Research: for researchers, research commissioners, and managers. http://www.invo.org.uk/pdfs/Involving_Young_People_in_Research_151104_FINAL.pdf 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 http://www.odi.org.uk/Rapid/Publications/Documents/WP251.pdf (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. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4132916 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. http://www.invo.org.uk/pdfs/TRUE%20final%20report130404.pdf 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. http://www.twocanassociates.co.uk/pdfs/The%20GREEN%20BOOK%20MAR08.pdf 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. http://www.ncb.org.uk/pdf/Pear%20Leaflet_final_lore.pdf National Institute for Health Research (2008), Payment rates for public involvement. http://www.invo.org.uk/pdfs/GuidanceonpaymentstothepublicJuly%202008.pdf
Oliver S, Gray, J. A bibliography of research reports about patients', clinicians' and researchers' priorities for research. London: James Lind Alliance, http://www.lindalliance.org/pdfs/JLA_Oliver%20and%20Gray%20report%2007_01_20.pdf 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: www.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 http://www.invo.org.uk/pdfs/Scott%20J%20(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. http://www.ncb.org.uk/pdf/Web%20guidelines%20CYP.pdf 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. http://www.invo.org.uk/pdfs/Involve_Exploring_Impactfinal28.10.09.pdf 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. http://www.invo.org.uk/pdfs/Social%20Research%20report%20301008with%20front%20and%20back%20cover.pdf Tarpey, M. (2006), Why people get involved in health and social care research: a working paper. Eastleigh: INVOLVE. http://www.invo.org.uk/pdfs/whypeoplegetinvolvedinresearch_August2006.pdf Thorne L, Purtell R, Baxter L (2001), Knowing How - a Guide to Getting Involved in Research by Folk.Us of Exeter University. http://www.invo.org.uk/pdfs/knowing_how.pdf |