James Lind Alliance

1. James Lind Alliance James Lind Alliance Tackling treatment uncertainties together Sally Crowe Chair of the James Lind Alliance

2. Our starting point……….Do treatment uncertainties considered important by patients and clinicians influence the clinical research agenda? James Lind Alliance

3. Our response? James Lind Alliance • Raise the profile of the question • Seek evidence to answer the question • Provide environments for debate • Working with disease-specific partners to address the question, by developing (and describing) new models/processes • Encourage others to join the Alliance • Influence the agenda by all of the above

4. Raise the profile of the question James Lind Alliance • Publishing papers in a range of journals • Speaking at conferences and workshops • Joining influential groups and forums

5. Seek evidence to answer the question James Lind Alliance A scoping study* identified a substantial literature addressing patients’ and clinicians’ research priorities. Only 6 studies compared patients’ priorities (or outcomes for assessment) with researchers, and only 3 compared clinicians’ and researchers’ priorities Looking to extend this work to a systematic review "Oliver S, Gray J. A bibliography of research reports about patients', clinicians' and researchers' priorities for new research. London: James Lind Alliance, November 2006, available on www.lindalliance.org

6. Seek evidence to answer the question JLA Objective: “Explore with the clinical research networks how research priorities are identified” Recently commissioned a mapping exercise with TwoCan who will work with UK clinical research networks. It will describe (where we can) how research funding priorities are reached, and if patients/carers are involved. This will also assist the JLA and Working Partnerships in using prioritised shared uncertainties to influence the clinical research agenda. James Lind Alliance

7. Provide environments for debate James Lind Alliance JLA actively seeks partners to host events that are high quality, accessible to a wide range of people, and address issues reflected in our objectives. So far we have partnered: The Lancet - How can clinical trialists serve the needs of clinicians and patients more effectively? Association of Medical Research Charities – Should patients tell researchers what to do – if so how? Wellcome Trust and the Royal Society of Medicine have assisted with venues

8. Provide environments for debate - 2008 Partnering with: Royal College of Nursing Institute and Social Science Research Unit – Patient Reported Outcome Measures v Patient Important Outcome Measures Health Coalition and HSC News – Transparency in research funding - whose problem? James Lind Alliance

9. Working with disease-specific partners to address the question, by developing (and describing) new models and processes James Lind Alliance We call these Working Partnerships Asthma – DUETs and Priority Setting process complete – working on final priorities to submit to funders. Incontinence – harvesting of uncertainties for DUETs about to begin; steering group set up with wider group of stakeholders. …..bid in for vitiligo; and epilepsy and diabetes ‘under construction’

10. How do JLA Working Partnerships fit with DUETs? • Good question! • Initially they were joined at the hip – now following some • corrective surgery, they are allied and linked, but can work • independently. • Why this approach? • More chance of survival, in the long term • We had some interest in DUETs and not WP’s, and the other way round. • By un-coupling them, they can be worked on independently until the people/resources/will is there to see the whole process through. James Lind Alliance

11. Identifying, assembling and publishing uncertainties in DUETs JLA Working Partnerships analyse these uncertainties JLA WPs agree shared priorities among treatment uncertainties Making research funders aware of these shared priorities

12. Working Partnerships • An emerging concept, and method • Document/describe/discuss progress iteratively • Develop tools to address issues that arise • Share this learning with subsequent WP’s, Affiliates and wider research community e.g. paper on different methods for priority setting • Building in processes that encourage/challenge partners to work transparently James Lind Alliance

13. Working Partnerships – ongoing research James Lind Alliance • External observation of Asthma Final Priority Setting Meeting (March 07) • Discussion and description of why some Working Partnerships haven’t got off the ground yet • Full PhD project describing and evaluating the evolution of the the Incontinence Working Partnership

14. Encourage others to join the James Lind Alliance James Lind Alliance We are a small team – 3 part timers! Lester Firkins Patricia Atkinson Currently have hundreds of organisations and individuals who share the JLA values, and want to see change. Join us!

15. Are we influencing the agenda? • It’s early days but: • Lots of people come to our events • We get lots of hits on the JLA website www.lindalliance.org and requests for more information • The term ‘treatment uncertainty’ is now much more familiar and used widely • The JLA is one of several organisations involved in influencing the research agenda e.g. UKCRN, UKCRC, and is contributing to these decision making groups • We are adding to the collective knowledge of methods and approaches about priority setting and PPI James Lind Alliance