The James Lind Alliance and I


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  • The James Lind Alliance and I

    1. 1. The James Lind Alliance - and I Lester Firkins Priority setting for Systematic Reviews Conference US Cochrane Center 11th July 2008
    2. 2. Introduction <ul><li>Who am I and how did I get here? </li></ul><ul><li>What did the journey teach me? </li></ul><ul><li>Is this the way research should be? </li></ul><ul><li>There is another way … </li></ul><ul><ul><li>The James Lind Alliance </li></ul></ul>
    3. 3. Who is Lester Firkins? <ul><li>Middle aged, middle class, white, male </li></ul><ul><li>35 years in UK banking industry </li></ul><ul><ul><li>Conventional </li></ul></ul><ul><ul><li>Content with rules and structure </li></ul></ul><ul><ul><li>Performance and achievement driven </li></ul></ul><ul><li>Fairly well read - with a broad understanding of most things </li></ul><ul><ul><li>Medicine and research is looked after by others - and always in my best interest </li></ul></ul><ul><ul><li>My money is well spent </li></ul></ul>
    4. 4. My journey starts here … <ul><li>Ellis Firkins </li></ul><ul><li>First Class Honours graduate in Design Technology </li></ul><ul><li>Teacher at major UK public school </li></ul><ul><li>Died on 1 March 2001 from variant Creutzfeld-Jacob Disease (vCJD) </li></ul>
    5. 5. My journey <ul><li>Chair, Human BSE Foundation </li></ul><ul><li>Co-chair, Prion-1 Clinical Trial, Medical Research Council (MRC) </li></ul><ul><li>Co-chair, New Therapies Scrutiny Group </li></ul><ul><li>Member, National Institute of Clinical Excellence (NICE) </li></ul><ul><li>Chair, James Lind Alliance </li></ul>
    6. 6. Consumer workshop on CJD trials <ul><li>MRC and Department of Health (DH) </li></ul><ul><li>“ To enable consumer understanding of clinical trial design and provide an opportunity for consumers and researchers to share ideas” </li></ul><ul><ul><li>Strong support for trial design </li></ul></ul><ul><ul><li>Strong support for collecting research </li></ul></ul><ul><ul><li>Need for design to be flexible to accommodate emerging therapies </li></ul></ul><ul><ul><li>Acknowledgement that it is good to be involved </li></ul></ul>
    7. 7. MRC Prion1 Clinical Trial <ul><li>2004 - A partially randomised patient preference trial to evaluate the activity and safety of quinacrine in human prion disease </li></ul><ul><li>Trial Steering Committee </li></ul><ul><ul><li>Sir Iain Chalmers and Lester Firkins </li></ul></ul><ul><li>Why Quinacrine? </li></ul><ul><ul><li>Systematic review </li></ul></ul><ul><ul><li>Daily Newspaper </li></ul></ul>
    8. 8. New Therapies Scrutiny Group <ul><li>MRC Committee to look for emerging therapies </li></ul><ul><li>Co- Chairs; </li></ul><ul><ul><li>Sir Michael Rawlins and Lester Firkins </li></ul></ul><ul><li>Recommendations for future research funding and effort </li></ul><ul><li>Theatre of conflict and dysfunction </li></ul>
    9. 9. The Missing Element <ul><li>Systematic Review </li></ul><ul><ul><li>..of treated and untreated patients with human prion disease </li></ul></ul><ul><ul><li>Published in Spring 2008 </li></ul></ul><ul><ul><li>Results too late to influence Prion-1 (now closed) </li></ul></ul><ul><ul><li>Flupirtine may have been a wiser option than Quinacrine (but no media lobby) </li></ul></ul><ul><li>Clear evidence that publication had been hindered by vested interests </li></ul>
    10. 10. <ul><li>A systematic review of therapeutic interventions in human prion disease </li></ul>Project Group Lesley Stewart 1 , Larysa Rydzewska 1 Geraldine Keogh 2 , Richard Knight 3 Advisory Group Iain Chalmers 4 , Lester Firkins 5 , Sarah Walker 1 1 MRC Clinical Trials Unit, 2 National Prion Clinic, 3 National CJD Surveillance Unit, 4 James Lind Library, 5 MRC New Therapies Scrutiny Group
    11. 11. The Unspeakable Element <ul><li>Minimal international collaboration </li></ul><ul><li>Academic jealousies </li></ul><ul><ul><li>Directive from Chief Medical Officer on how UK institutions must work together </li></ul></ul><ul><ul><li>Monthly meeting between Heads of Research Units to ensure that they work together </li></ul></ul>
    12. 12. The Isolated Element <ul><li>Pentosan polysulphate </li></ul><ul><li>Promoted by one man looking after his son </li></ul><ul><li>2003 - High Court agreement for (unapproved) therapy to be administered </li></ul><ul><li>3 patients still alive - longer than “normal” </li></ul><ul><li>No coordinated monitoring whatsoever </li></ul><ul><li>Mutual distrust leading to complete lack of learning and patient care </li></ul>
    13. 13. What have I seen? <ul><li>A hugely expensive trial can be set up with no formal understanding of what has been done in the past </li></ul><ul><li>Media can influence decisions more than grounded knowledge </li></ul><ul><li>Unless potential therapies find a “friend” their application can be frustrated </li></ul><ul><li>“ Patient First” promoted as an aspiration - but not if it conflicts with academic interests </li></ul><ul><li>Dysfunction and jealousies betray the interests of patients and their families </li></ul>
    14. 14. What about a formal programme? One option <ul><li>James Lind Alliance </li></ul>
    15. 15. The James Lind Alliance <ul><li>Formed in 2004 by; </li></ul><ul><ul><li>Royal Society of Medicine </li></ul></ul><ul><ul><li>James Lind Library </li></ul></ul><ul><ul><li>INVOLVE (formerly Consumers in NHS Research) </li></ul></ul><ul><li>Funded by DH and MRC till 2010, to see if it works </li></ul><ul><li>Tackling treatment uncertainties - together (Patients and Clinicians) </li></ul>
    16. 16. What are our objectives <ul><li>To support “Working Partnerships” of patients (and their carers) and clinicians to prioritise “Treatment Uncertainties” into a list for research funders to address </li></ul><ul><li>To support and raise the profile of proper involvement for all people with an interest in medical research </li></ul><ul><li>To gain evidence on how best to prioritise with Patients and Clinicians collaborating </li></ul>
    17. 17. JLA - working partnerships <ul><li>Asthma </li></ul><ul><ul><li>JLA approached by British Thoracic Society and Asthma UK </li></ul></ul><ul><ul><li>Worked together over many months. </li></ul></ul><ul><ul><ul><li>Harvesting Uncertainties </li></ul></ul></ul><ul><ul><ul><li>Checking and verifying “known unknowns” </li></ul></ul></ul><ul><ul><ul><li>Entering into a standard database “DUETs” </li></ul></ul></ul><ul><ul><ul><li>Priority setting meetings - top ten list agreed </li></ul></ul></ul><ul><ul><li>What Next </li></ul></ul><ul><ul><ul><li>BMJ article in preparation </li></ul></ul></ul><ul><ul><ul><li>Systematic review of inhaled and oral steroids commissioned </li></ul></ul></ul><ul><ul><ul><li>HTA standing ready! </li></ul></ul></ul>
    18. 18. JLA - working partnerships <ul><li>Urinary Incontinence </li></ul><ul><ul><li>JLA approached by Incontact and University of Aberdeen (Cochrane) </li></ul></ul><ul><ul><li>Approached 30 related organisations - of which 21 have joined as formal partners </li></ul></ul><ul><ul><li>Currently Harvesting Uncertainties - to conclude by 30th June </li></ul></ul><ul><ul><li>Data cleaning and priority setting by December 2008 </li></ul></ul><ul><li>Schizophrenia </li></ul><ul><li>Vitiligo </li></ul><ul><li>Diabetes </li></ul>
    19. 19. NIHR HTA Annual Report 2007 <ul><li>“ The HTA programme encourages patient involvement at every stage and it is continuing to take this forward and develop it” </li></ul><ul><li>“… . the HTA programme is working with the JLA to capture those priorities suitable for HTA research”. </li></ul>
    20. 20. WIFM -Patients <ul><li>Real involvement in their problems </li></ul><ul><li>Share of Voice </li></ul><ul><li>Someone showing an interest </li></ul><ul><li>Participation </li></ul>
    21. 21. WIFM Clinicians <ul><li>Opportunity to share their unique knowledge and perspective </li></ul><ul><li>Getting their personal and professional concerns over “Uncertainties” acknowledged and addressed </li></ul>
    22. 22. WIFM Researchers <ul><li>Ideas that make a real difference </li></ul><ul><li>Support in the ethics process </li></ul><ul><li>Participation within the research itself </li></ul><ul><li>Advocates and disseminators </li></ul><ul><li>Seeing the difference in people’s eyes </li></ul>
    23. 23. Will the JLA work? <ul><li>Three years to find out! </li></ul><ul><li>It needs to be seen as invaluable at every level </li></ul><ul><li>It needs to find a permanent home </li></ul><ul><li>It may stimulate others to do something better </li></ul>
    24. 24. Thank You <ul><li>Delighted and proud to be able to tell my story </li></ul><ul><li>Will it make a difference? </li></ul><ul><ul><li>Could it work in America? </li></ul></ul><ul><ul><ul><li>No reason why it wouldn’t be worth a try … </li></ul></ul></ul><ul><li>www. lindalliance .org </li></ul>