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| Mike Saks and Judith Allsop |
Chapter 19 - Involving the
Consumer in Health Research
Sophie Hill |
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| Contributor
biography |
| Sophie Hill is Coordinating Editor
of the Cochrane Consumers and Communication Review Group
in the Faculty of Health Sciences at La Trobe University,
Australia. She works at the intersection of evidence-based
health care and consumer participation. Her current research
interest is building the evidence base of interventions
to involve people in all facets of their health care.
Her PhD was an in-depth study of people’s experiences
of surgery. She has worked for health consumer organizations
and government. |
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| Chapter overview |
| This chapter discusses the involvement
of consumers in health research and assesses the effect
or impact of participation, outlining potential advantages
and disadvantages from different perspectives. In the
course of the chapter, she presents the views and experiences
of consumers who have been involved in research in the
Cochrane Collaboration, an international organization |
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| Chapter links |
| Chapter
15 - Governance and Ethics in Health Research |
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| Suggested
Online Readings |
| Abma,
T.A. (2005) ‘Patient Participation in Health Research:
Research With and for People With Spinal Cord Injuries’,
Qualitative Health Research, 15 (10): 1310-28. |
| This article argues that a responsive-constructivist
approach to evaluation fits with the aims and features
of patient participation. Its potential is examined through
a case example of a dialogue between patients and (clinical)
researchers in the field of spinal cord injuries. Learning
experiences and the (un)expected difficulties and potential
for creating social conditions appropriate for patient
participation in health research are considered. |
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| Day,
C., Carey, M. and Surgenor, T. (2006) ‘Children's
Key Concerns: Piloting a Qualitative Approach to Understanding
their Experience of Mental Health Care’, Clinical
Child Psychology and Psychiatry, 11 (1): 139-55. |
| This article reports on a pilot project
to apply the principles for involving children in research
on the experience of using services. The approach aimed
to explore children’s experience of using mental
health services. Eleven children who had attended mental
health services took part in focus groups to discuss their
experience. Thematic content analysis of transcribed interviews
pinpointed 13 themes that identified children's key concerns
and clarified what was meant by child-centred care. The
implications for a child-centred practice are discussed.
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| Oliver,
S., Milne, R., Bradburn, J.D., Buchanan. P., Kerridge,
L., Walley, T. and Gabbay, J. (2001) ‘Investigating
Consumer Perspectives on Evaluating Health Technologies’,
Evaluation, 7 (4): 468-86. |
| This paper discusses a pilot study
to involve healthcare consumers in identifying research
topics, and prioritizing, commissioning and reporting
their evaluation of health technologies. Records of consumers'
suggestions were analysed for their content and, wherever
possible, they were compared with suggestions from academics
and staff of the UK National Health Service. Consumers
tended to highlight issues about patients' views, social
contexts, information and support needs, the importance
of long-term outcomes and the dissemination of research
findings to consumers. These issues are not usually addressed
by professionals who tend to focus on the technical and
economic aspects of evaluation. |
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| Further Reading |
| Brown, P. and Zavestoski, S. (2004)
‘Social Movements in Health: An Introduction’,
Sociology of Health and Illness, 26(6): 679-94. |
| This is good reading for those interested
in acquiring a sociological understanding of health social
movements. |
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| Nilsen, E.S., Myrhaug, H.T., Johansen,
M., Oliver, S. and Oxman, A.D. (2006) ‘Methods of
Consumer Involvement in Developing Healthcare Policy and
Research, Clinical Practice Guidelines and Patient Information
Material’, Cochrane Database of Systematic Reviews,
Issue 3. Art.: CD004563. DOI: 10.1002/14651858.CD004563.pub2. |
| This key reference is a Cochrane systematic
review of evaluation studies relevant to consumer participation
in research, which is regularly updated. |
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| Oliver, S., Clarke-Jones, L., Rees,
R., Milne, R., Buchanan, P., Gabbay, J., Gyte, G., Oakley,
A. and Stein, K. (2004) ‘Involving Consumers in
Research and Development Agenda Setting for the NHS: An
Evidence-based Approach’, Health Technology Assessment,
8(15). Available at http://www.ncchta.org/fullmono/mon815.pdf. |
| This provides the detailed background
on the development of the framework for analysing consumer
participation in research. |
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© Sage Publications Ltd. |
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