The James Lind Alliance and I

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