The James Lind Alliance

1. The James Lind Alliance The Patients and Patients’ Charities perspective Lester Firkins – JLA Jenny Versnel – Asthma UK

2. James Lind Alliance • A non-profit making initiative funded by MRC and DH • To bring Patients and Clinicians together “in Partnership” to identify and prioritise the most important unanswered questions • To give funders of health research an awareness of what matters most to patients and clinicians • Asthma is the first Working Partnership

3. Aims of this Presentation • To share the views of two people “representing patients” involved with the JLA • To consider the challenges the JLA face • To stimulate discussion - and seek views and guidance on next steps …

4. The Asthma story so far .. • Asthma UK and the British Thoracic Society expressed keen interest in the JLA concept and “volunteered” to be the pilot • Several meetings and many conversations ahead of - the full priority setting meeting to be held in Spring 2006 • Many issues and challenges identified and “confronted”

5. Who are we? • Lester Firkins • 35 Years a Career Banker • Lost eldest child to a rare disease (vCJD) • Co-Chair of an MRC Clinical Trial • Member of INVOLVE • Member of the JLA Steering Committee • Continually surprised at how things are not done - Patients views are not routinely sought to determine research priorities

6. Who are we? • Jenny Versnel • Assistant Director, Research at Asthma UK • Scientific background • Moved from the laboratory to a charity 10 years ago • Strongly believes that the scientific community can learn from the experiences of patients • Combining clinical expertise with the experiences of patients helps to focus the direction of research and make it more applicable to those with conditions

7. What we mean by Patient • Noun • A person receiving or registered to receive medical treatment • As opposed to the “Adjective” • Able to wait without becoming annoyed or anxious • Slow to lose ones temper with irritating people or situations

8. The challenges for the JLA “Patients and Clinicians should work together to agree which uncertainties matter most and thus deserve priority attention” • Who is empowered to speak for Patients at these meetings? • What rights does anyone (individually or in a group) have to speak on behalf of patients • Is true “representation” possible • The action of speaking or acting on behalf of an individual or a group

9. The JLA Goal • The JLA process leads to two groups, in a room, working together to prioritise unanswered uncertainties which should be researched. • How can this be achieved? - The breadth of the challenge - How do we get acceptable representation? • Perhaps the best that can be achieved is to ensure that the widest Patient “perspective” is represented

10. The breadth of our challenge • Asthma • 5.2 million people with asthma • Differing levels of severity and thus different needs • A condition that does not discriminate on race, gender or age • Main charity representing people with asthma but impossible to speak on behalf of everyone with asthma

11. How should the JLA act? • Intuitively all the Affiliates would want the JLA to do “the right thing” • For it to succeed and excel the JLA must develop a reputation - and therefore manage any potential Reputational Risk • Minimize the criticism the “wrong people” have been involved • Demonstrate that the prioritised uncertainties are seen as the most important by the widest “practically achievable” group of patients.

12. The way forward“Support and Challenge” • Develop a way of working with prospective Patient Groups to ensure, as far as possible, a robust breadth of perspective • A series of questions to explore critical areas • Not an interrogation - the JLA has no right to impose its views and opinions on others • However, should the JLA have minimum expectations for the process to succeed?

13. 1. What are the aspirations of your Organisation? • Does the primary purpose of the Organisation fit with the goals of the JLA?

14. 2. How is your Board elected? • What voice does the “membership” have in the people who lead and speak for the Organisation?

15. 3. How are you funded? • Is there any chance that sources of funding may give rise to undue influence on the Organisation’s contribution to the prioritisation process?

16. 4. Are there other support groups? • What do they do that is different? • How do you work together? • Should JLA involve them through yourselves? • Are they likely to be critical of your sole involvement? • How can that risk be managed?

17. 5. How do you communicate with members? • What processes do you have for: • Communicating with them • Seeking their views on research matters

18. 6. How would you involve them? • How will you take this challenge to them? • Would a specific communication exercise be appropriate – to help clarify and capture their perspective? • Questionnaire • Focus Groups • Meetings

19. 7. Do you have a list of research priorities? • This would give evidence of active interest in this area • This would demonstrate active involvement with patients • If affirmative, would give an excellent start to the JLA process – if negative it doesn’t preclude involvement

20. How does that feel? • This list of questions may feel intrusive - but what is the alternative? • Does the JLA have the right to ask these questions? • Is there a risk that the JLA may seem to be criticising, by implication, Patient Groups? • Would there ever be a situation where the JLA should say “Sorry - we cannot / are not prepared to, help”

21. The way forward • Working with Asthma UK has undoubtedly helped the JLA raise its game • Is it possible that, in considering these questions and challenges, the JLA will help Patient Groups raise their game? • Is this the right way to proceed?