Involving consumers successfully in NHS research: A national survey

Health Expectations

Volumn 10, Issue 4, 2007, Pages 380-391

  Barber, Rosemary ^a,b   Boote, Jonathan D ^a,b   Cooper, Cindy L ^b  

^a SHEFFIELD HEALTH AND SOCIAL CARE NHS FOUNDATION TRUST   (United Kingdom)

^b UNIVERSITY OF SHEFFIELD   (United Kingdom)

Author keywords

Consumer; Consumer involvement; NHS research; Survey

Indexed keywords

CONSUMER; HEALTH SURVEY; HUMAN; MEDICAL RESEARCH; METHODOLOGY; ORGANIZATION; PRIORITY JOURNAL; QUESTIONNAIRE; REVIEW; UNITED KINGDOM; UNIVERSITY;

CONSUMER PARTICIPATION; GREAT BRITAIN; HUMANS; NATIONAL HEALTH PROGRAMS; QUESTIONNAIRES; RESEARCH;

EID: 35748930837     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/j.1369-7625.2007.00457.x     Document Type: Review

References (36)

1. The Cochrane Consumer Network. http://www.cochrane.org/consumers/ homepage.htm (accessed October 2006).
2. The Consumers' Health Forum of Australia. http://www.nhmrc.gov.au (accessed October 2006).
3. National Institutes of Health Director's Council of Public Representatives. http://www.copr.nih.gov (accessed October 2006).
4. Health Technology Assessment Programme http://www.ncchta.org (accessed October 2006).
5. National Cancer Research Institute. http://www.ncrn.org.uk (accessed October 2006).
6. National Forensic Mental Health R&D Programme. http://nfmhp.org.uk (accessed October 2006).
7. Department of Health. Best Research for Best Health. London : Department of Health, 2006.
8. Department of Health. Research Governance Framework for Health and Social Care. London : Department of Health, 2005.
9. Department of Health. Research and Development for a First class service. London: London : Department of Health, 1999.
10. INVOLVE. http://www.invo.org.uk (accessed October 2006).
11. Oliver S, Clarke-Jones L, Rees R et al. Involving Consumers in Research and Development Agenda Setting for the NHS: Developing an Evidence-Based Approach. Health Technology Assessment, 2004, Vol 8, number 15, http://www.ncchta.org (accessed October 2006).
12. Faulkner A, Layzell S. Strategies for Living: The Research Report. London : The Mental Health Foundation, 2000.
13. Andejeski Y, Bisceglio I, Dickersin K et al. Qualitative impact of including consumers in the scientific review of breast cancer research proposals. Journal of Women's Health & Gender-Based Medicine, 2002 11 : 379 388.
14. Trivedi P, Wykes T. From passive subjects to equal partners: qualitative review of user involvement in research. British Journal of Psychiatry, 2002 181 : 468 472.
15. Rhodes P, Nocon A, Booth M, Chowdrey MY et al. Service users' research advisory group from the perspectives of both service users and researchers. Health and Social Care in the Community, 2002 10 : 402 409.
16. Patterson C. Consumer Involvement in Research into Complementary and Alternative Therapies. Bristol : MRC Health Services Research Collaboration, University of Bristol, 2003.
17. Medical Research Council. http://www.mrc.ac.uk (accessed October 2006).
18. Wilsdon J, Willis R. See-Through Science. London : Demos, 2004.
19. Editorial. Going Public. Nature, 2004 431 (7011 883.
20. Hanley B, Truesdale A, King A, Elbourne D, Chalmers I. Involving consumers in designing, conducting and interpreting randomised controlled trials: questionnaire survey. British Medical Journal, 2001 322 : 519 523.
21. Barnard A, Carter M, Britten N, Purtell R, Wyatt K, Ellis A. An Evaluation of Consumer Involvement in the London Primary Care Studies Programme. Eastleigh : INVOLVE, 2005.
22. Caron-Flinterman F. A New Voice in Science (p32). Amsterdam : Vrije Universiteit Amsterdam, 2005.
23. O'Donnell M, Entwistle V. Consumer involvement in research projects: the activities of research funders. Health Policy, 2004 69 : 229 238.
24. O'Donnell M, Entwistle V. Consumer involvement in decisions about what health-related research is funded. Health Policy, 2004 70 : 281 290.
25. Chambers R, O'Brien LM, Linnell S, Sharp S. Why don't health researchers report consumer involvement?. Quality in Primary Care, 2004 12 : 151 157.
26. Standing Advisory Group on Consumer Involvement in the NHS R&D Programme. Research: What's in it for Consumers?. London : Department of Health, 1998.
27. Telford R, Boote J, Cooper C. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expectations, 2004 7 : 209 220.
28. Royle J, Steel R, Hanley B, Bradburn J. Getting Involved in Research: a Guide for Consumers. Winchester : Consumers in NHS Research Support Unit, 2001.
29. Boote J, Telford R, Cooper C. Principles and indicators of successful consumer involvement in NHS research: results of a consensus study and subgroup analysis. Health Policy, 2006 3 : 280 297.
30. National Research Register. http://www.nrr.nhs.uk (accessed October 2006).
31. Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In : Bryman A, Burgess RG (eds) Analysing Qualitative Data Analysis. London : Routledge, 1994.
32. Hanley B, Bradburn J, Barnes M et al. Involving the Public in NHS, Public Health and Social Care Research: Briefing Notes for Researchers, 2nd edn. Eastleigh : INVOLVE, 2004.
33. National Health and Medical Research Council and Consumers' Health Forum of Australia. Statement on Consumer and Community Participation in Health and Medical Research. Cranberra : AusInfo, 2001.
34. Department of Health. Report of the Ad Hoc Advisory Group on the Operation of NHS Research Ethics Committees. London : Department of Health, 2005.
35. Faulkner A. The Ethics of Survivor Research. Bristol : Published for the Joseph Rowntree Foundation by the Policy Press, 2004.
36. Alzheimer's Society. Quality research in dementia. http://www.qrd. alzheimers.org.uk (accessed October 2006).