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Comparisons of patients’, clinicians’ and researchers’ agendas
Sandy Oliver, Reader in Public Policy
www.ioe.ac.uk/ssru/perspectives
Sub-brand to go here
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Contents
1 Mismatches in research priorities
2 Steps for setting research priorities
3 Methods for setting research priorities
4 Extending the James Lind Alliance bibliography
5 Future work
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Mismatches in research priorities (1)Royal College of Nursing workshop• Service users’ research priorities
– long term health needs – impact of disability on the quality of life for individuals and their families– provision of information
• Professionals’ research priorities– topics promoting professional interests
• Researchers’ priorities – topics that developed new frontiers of knowledge
Grant-Pearce, C., Miles, I. & Hills, P. Mismatches in Priorities for Health Research between Professionals and Consumers PREST Manchester University 1998
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Mismatches in research priorities (2)
Chartered Society of Physiotherapy• Physiotherapists raised issues about
– professional and educational needs • Service users raised issues about
– post natal exercises
After sharing priorities, mismatches were reduced.
Grant-Pearce, C., Miles, I. & Hills, P. Mismatches in Priorities for Health Research between Professionals and Consumers PREST Manchester University 1998
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Mismatches in research priorities (3)Arise from differences in:• values and life experiences• understandings of science and technology and the research process• access to decision making structures
Also appear between:• different groups of professionals
– nurses and midwives compared with medics or patients
ConclusionHealth research priority setting can benefit considerably (on grounds of equity, efficiency and engagement) from increased patient participation… to allow mismatches to be addressed and to enrich the priority setting process.
Grant-Pearce, C., Miles, I. & Hills, P. Mismatches in Priorities for Health Research between Professionals and Consumers PREST Manchester University 1998
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Steps for setting research priorities……about the effects of care
1. What do patients want to know?
2. What do clinicians want to know?
3. Has research found the answers?Can research find the answers?
4. Which are the unanswered questions?
5. Which are the most important unanswered questions?
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Steps for setting research priorities…
…about the effects of care
1. What do patients want to know?
2. What do clinicians want to know?
3. Has research found the answers?Can research find the answers?
4. Which are the unanswered questions?
5. Which are the most important unanswered questions?
Ask patients
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Steps for setting research priorities…
…about the effects of care
1. What do patients want to know?
2. What do clinicians want to know?
3. Has research found the answers?Can research find the answers?
4. Which are the unanswered questions?
5. Which are the most important unanswered questions?
Ask patients
Ask clinicians
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Steps for setting research priorities…
…about the effects of care
1. What do patients want to know?
2. What do clinicians want to know?
3. Has research found the answers?Can research find the answers?
4. Which are the unanswered questions?
5. Which are the most important unanswered questions?
Ask researchers
Ask patients
Ask clinicians
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Steps for setting research priorities…
…about the effects of care
1. What do patients want to know?
2. What do clinicians want to know?
3. Has research found the answers?Can research find the answers?
4. Which are the unanswered questions?
5. Which are the most important unanswered questions?
Ask researchers
Ask patients
Ask clinicians
Shared uncertainties
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Steps for setting research priorities…
…about the effects of care
1. What do patients want to know?
2. What do clinicians want to know?
3. Has research found the answers?Can research find the answers?
4. Which are the unanswered questions?
5. Which are the most important unanswered questions?
Ask researchers
Ask patients
Ask clinicians
Shared priorities
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Methods for setting priorities (1)
Eliciting public preferences• Quantitative techniques
– ranking, rating or choice-based approaches• Qualitative techniques with individuals
– one-to-one interviews, interviews in pairs, case study analyses, the Delphi technique and complaints procedures
• Qualitative techniques with groups– focus groups, concept mapping, citizens’ juries, consensus panels, public
meetings and nominal group techniques
Ryan M, Scott DA, Reeves C, Bate A, van Teijlingen ER, Russell EM, et al. Eliciting public preferences for healthcare: a systematic review of techniques. Health Technol Assess 2001;5(5).
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Methods for setting priorities (2)
Consensus development methods• Setting the task or question to be addressed• Selecting the participants • Choosing and preparing the scientific evidence • Structuring the interaction • Methods of synthesising individual judgements
No methods reviewed for developing consensus with patients or the public
Black, N; Murphy, M; Lamping, D; McKee, M; Sanderson, C; Askham, J; Marteau, T. Consensus development methods: a review of best practice in creating clinical guidelines. Journal of Health Services Research and Policy Vol: 4, Issue: 4, Pages: 236-248.
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Setting research priorities with patients or the public87 detailed descriptions• Inviting groups to collaborate (13)• Consulting groups (12)• Inviting individuals to collaborate (17)• Consulting individuals (13)• Responding to patients/ the public (22)• Patients/ the public working independently (10)
1999 search: Mostly ‘grey literature’, some reflective reports, very few studies
Oliver S et al Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technology Assessment 2004; 8 (15) 1-148
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Methods for setting research priorities
Committee membership
NHS R&D programmes
1 or 2 service users
Little or no reflection on working together
No records of users’ views
Few or no lessons learnt
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Methods for setting research priorities
Arthritis patientsInterviews and questionnairesWhat treatments had they tried?Which treatments deserved more research?All treatments – including education and advice, physical therapy and complimentary therapy
One-to-one and group interviews
Tallon D, Chard J, Dieppe P (2000). Relation between agendas of the research community and the research consumer. Lancet 355:2037-40
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James Lind Alliance Bibliography
16 publications addressing people’s priorities for research (2006)
• Care around the time of birth• Osteoarthritis of the knee• Rheumatoid arthritis• Homelessness• Alzheimer’s disease• Mental health• Asthma and COPD • Paediatric haematology, oncology, immunology and infectious diseases
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Extending the JLA Bibliography
Seeking studies that ask:• What are patients’ priorities for research and outcomes for assessing the
effects of treatments?• What are clinicians’ priorities for research and outcomes for assessing the
effects of treatments?• How do these priorities compare with each other, and with research
reported or researchers’ future priorities?
Oliver S, Gray J. A bibliography of research reports about patients', clinicians' and researchers' priorities for new research. London: James Lind Alliance, December 2006.
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Searching for studies
Electronic searching
Keyword and free text searches of• MEDLINE• EMBASE • PsycINFO • CINAHL • AMED • The Cochrane Methodology Register
Authors and citations in original bibliography• Social Science Citation
Index
Hand searching• Health Expectations• Reference lists of
relevant publications
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Clinicians’ priorities
156
156 studies addressed clinicians’ priorities for research or outcomes for assessment
Judging from titles and abstracts…
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Patients’ or public’s priorities
96
96 studies addressed patients’ or the public’s priorities for research or outcomes for assessment
Judging from titles and abstracts…
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Patients’ or public’sPriorities
Clinicians’ priorities 42
96156
42 additional studies addressed BOTH clinicians’ and patients’ or the public’s priorities for research or outcomes for assessment
Judging from titles and abstracts…
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Researchers’ priorities
Patients’ or public’s priorities
Clinicians’ priorities
63
42 96156
3 more compared clinicians’ priorities with researchers’
6 more compared patients’ and the public’s priorities with researchers’
Judging from titles and abstracts…
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Priorities for what?
Studies focused on:• Health conditions
– e.g cancer, cardiovascular disease, infection • Age ranges
– e.g. neonatal, women’s health, later life • Clinical services
– e.g anaesthesia, complementary medicine• Health care practitioners
– e.g. nursing
Judging from titles and abstracts…
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Extended JLA bibliography
A substantial literature (303+ reports, mainly in journals) • Addressing patients’ and clinicians’ research priorities that has not been
included in previous systematic reviews. • Further studies may be identified through searching
– studies citing those already identified – the reference lists of those already identified.
www.lindalliance.org
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What might we learn from this literature?
1. What do patients want to know?
2. What do clinicians want to know?
3. Has research found the answers?Can research find the answers?
4. Which are the unanswered questions?
5. Which are the most important unanswered questions?
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What might we learn from this literature?
1. What do patients want to know?
2. What do clinicians want to know?
3. Has research found the answers?Can research find the answers?
4. Which are the unanswered questions?
5. Which are the most important unanswered questions?
6. What methods can be used with patients, clinicians and researchers?
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Future work
• Seek further studies• Inspect full reports• Analyse their methods
– Who they involved– How they elicited questions– How they discussed and decided priorities
• Record shared uncertainties and shared priorities• Learn from their methods
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Thank you
Social Science Research UnitInstitute of EducationUniversity of London18 Woburn SquareLondon WC1H 0NR
Tel +44 (0)20 7612 6397Fax +44 (0)20 7612 6400Email [email protected] www.ioe.ac.uk/ssru