Comparisons of patients’, clinicians’ and researchers’ agendas

1. Sub-brand to go here Comparisons of patients’, clinicians’ and researchers’ agendas Sandy Oliver, Reader in Public Policy www.ioe.ac.uk/ssru/perspectives

2. Contents • Mismatches in research priorities • Steps for setting research priorities • Methods for setting research priorities • Extending the James Lind Alliance bibliography • Future work

3. 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

4. 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

5. 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 • Conclusion • Health 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

6. Steps for setting research priorities… • …about the effects of care • What do patients want to know? • What do clinicians want to know? • Has research found the answers?Can research find the answers? • Which are the unanswered questions? • Which are the most important unanswered questions?

7. Steps for setting research priorities… • …about the effects of care • What do patients want to know? • What do clinicians want to know? • Has research found the answers?Can research find the answers? • Which are the unanswered questions? • Which are the most important unanswered questions?

8. Steps for setting research priorities… • …about the effects of care • What do patients want to know? • What do clinicians want to know? • Has research found the answers?Can research find the answers? • Which are the unanswered questions? • Which are the most important unanswered questions?

9. Steps for setting research priorities… • …about the effects of care • What do patients want to know? • What do clinicians want to know? • Has research found the answers?Can research find the answers? • Which are the unanswered questions? • Which are the most important unanswered questions?

10. Steps for setting research priorities… • …about the effects of care • What do patients want to know? • What do clinicians want to know? • Has research found the answers?Can research find the answers? • Which are the unanswered questions? • Which are the most important unanswered questions? Shared uncertainties

11. Steps for setting research priorities… • …about the effects of care • What do patients want to know? • What do clinicians want to know? • Has research found the answers?Can research find the answers? • Which are the unanswered questions? • Which are the most important unanswered questions? Shared priorities

12. 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).

13. 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.

14. Setting research priorities with patients or the public • 87 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

15. 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

16. Methods for setting research priorities One-to-one and group interviews • Arthritis patients • Interviews and questionnaires • What treatments had they tried? • Which treatments deserved more research? • All treatments – including education and advice, physical therapy and complimentary therapy Tallon D, Chard J, Dieppe P (2000). Relation between agendas of the research community and the research consumer. Lancet 355:2037-40

17. 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

18. 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.

19. 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 Searching for studies

20. Judging from titles and abstracts… 156 156 studies addressed clinicians’ priorities for research or outcomes for assessment

21. Judging from titles and abstracts… 96 96 studies addressed patients’ or the public’s priorities for research or outcomes for assessment

22. Judging from titles and abstracts… 42 96 156 42 additional studies addressed BOTH clinicians’ and patients’ or the public’s priorities for research or outcomes for assessment

23. Judging from titles and abstracts… 3 6 96 156 42 3 more compared clinicians’ priorities with researchers’ 6 more compared patients’ and the public’s priorities with researchers’

24. Priorities for what? Judging from titles and abstracts… • 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

25. 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

26. What might we learn from this literature? • What do patients want to know? • What do clinicians want to know? • Has research found the answers?Can research find the answers? • Which are the unanswered questions? • Which are the most important unanswered questions?

27. What might we learn from this literature? • What do patients want to know? • What do clinicians want to know? • Has research found the answers?Can research find the answers? • Which are the unanswered questions? • Which are the most important unanswered questions? • What methods can be used with patients, clinicians and researchers?

28. 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

29. Thank you Social Science Research Unit Institute of Education University of London 18 Woburn Square London WC1H 0NR Tel +44 (0)20 7612 6397 Fax +44 (0)20 7612 6400 Email ssru@ioe.ac.uk Web www.ioe.ac.uk/ssru