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Avoiding waste in research:the role of public involvement        Iain ChalmersCoordinator, James Lind Initiative‘Putting p...
The skeletons in academic  medicine’s cupboards
Questions relevant                         Appropriate design          Accessible              Unbiased and  to clinicians...
Mismatch of patients’ and researchers’priorities for osteoarthritis of the knee              Tallon, Chard and Dieppe. Lan...
Priority treatment outcome from asurvey of patients with rheumatoidarthritis was not painIt was fatigue
For every ongoing trial being conductedwithin the NHS, the UK Clinical TrialsGateway should aim to provide access to:• a l...
Reliable, user-friendly information about specific  ongoing clinical trials isstill NOT generally available
2003- The James Lind Initiative Funded by the National Institute of HealthResearch and the Medical Research Council“to pro...
Programme of work of         The James Lind Initiative1. Identifying and publishing uncertainties about the   effects of t...
The UK Database of Uncertainties   about the Effects of TreatmentsEstablished to publish uncertainties about the effects o...
UK DUETs draws on three main sources •Patients, carers and clinicians unanswered  questions about the effects of treatment...
Programme of work of         The James Lind Initiative1. Identifying and publishing uncertainties about the   effects of t...
To increase the focus of the therapeutic  research agenda on questions and  priorities shared by patients and clinicians.T...
Lester Firkins                           Chair, JLA Strategy                          & Development Group     Sally Crowe ...
Involving patients, carers and   clinicians in research priority setting            The JLA’s principles•Inclusive   •Bala...
JLA Priority Setting PartnershipsCompleted                 Current•Asthma                   •Acne•Urinary incontinence    ...
Research priority themes [across asthma,  incontinence, vitiligo, eczema, stroke, prostate cancer,  schizophrenia, aspects...
Questions relevant                         Appropriate design          Accessible              Unbiased and  to clinicians...
Publication (2007) after registration (1999)             Country              Size              Phase              FunderR...
“Studies that report positive or significant resultsare more likely to be published and outcomesthat are statistically sig...
Alessandro Liberati
Because research results have notbeen made public……patients have suffered and diedunnecessarily and resources for healthca...
TGN1412      TGN 1412
What is the position of theAcademy of Medical Sciences?
2006 letter to Prof John Bell,President, Academy of Medical Sciences
What should be done?The public needs to be madeaware of how the resources theyprovide for research are beingwasted.The pub...
Programme of work of         The James Lind Initiative1. Identifying and publishing uncertainties about the   effects of t...
www.jameslindlibrary.org
Promote research on the effects of treatments……but only if it meets scientific and ethical principles
www.testingtreatments.org
“Bad Science introduces the basic scientific principles tohelp everyone become a more effective bullshit detector.”
Involve conference 2
Involve conference 2
Involve conference 2
Involve conference 2
Involve conference 2
Involve conference 2
Involve conference 2
Involve conference 2
Involve conference 2
Involve conference 2
Involve conference 2
Involve conference 2
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  1. 1. Avoiding waste in research:the role of public involvement Iain ChalmersCoordinator, James Lind Initiative‘Putting people first in research’ INVOLVE Conference Nottingham, 13 November 2012
  2. 2. The skeletons in academic medicine’s cupboards
  3. 3. Questions relevant Appropriate design Accessible Unbiased and to clinicians & and methods? full publication? usable report? patients?Low priority questions Over 50% studies Over 50% of studies Over 30% of trialaddressed designed without never published in full interventions not reference to sufficiently describedImportant outcomes systematic reviews of Biased under-not assessed existing evidence reporting of studies Over 50% of planned with disappointing study outcomes notClinicians and Over 50% of studies results reportedpatients not involved fail to take adequatein setting research steps to reduce Most new researchagendas biases, e.g. not interpreted in the unconcealed context of systematic treatment allocation assessment of other relevant evidence 50 50 50 % % % 85% Research waste = over $85 Billion / year
  4. 4. Mismatch of patients’ and researchers’priorities for osteoarthritis of the knee Tallon, Chard and Dieppe. Lancet, 2000.
  5. 5. Priority treatment outcome from asurvey of patients with rheumatoidarthritis was not painIt was fatigue
  6. 6. For every ongoing trial being conductedwithin the NHS, the UK Clinical TrialsGateway should aim to provide access to:• a lay summary• the patient information sheet• the WHO 20-item dataset• the protocol, with links to the systematic review(s) showing why the trial is needed• the trial website (if one exists)
  7. 7. Reliable, user-friendly information about specific ongoing clinical trials isstill NOT generally available
  8. 8. 2003- The James Lind Initiative Funded by the National Institute of HealthResearch and the Medical Research Council“to promote acknowledgement of uncertainties about the effects of treatments, and research to address them.”
  9. 9. Programme of work of The James Lind Initiative1. Identifying and publishing uncertainties about the effects of treatments: UK Database of Uncertainties about the Effects of Treatments2. Identifying patients’ and clinicians’ shared priorities for research about the effects of treatments: James Lind Alliance3. Explaining and illustrating the development of fair tests of treatments in health care: James Lind Library and Testing Treatments
  10. 10. The UK Database of Uncertainties about the Effects of TreatmentsEstablished to publish uncertainties about the effects of treatments which cannot currently be answered by referring to relevant and reliable, up-to-date systematic reviews of existing research evidence
  11. 11. UK DUETs draws on three main sources •Patients, carers and clinicians unanswered questions about the effects of treatments •Research recommendations in reports of systematic reviews and clinical guidelines •Ongoing research, both systematic reviews in preparation and new primary studies
  12. 12. Programme of work of The James Lind Initiative1. Identifying and publishing uncertainties about the effects of treatments: UK Database of Uncertainties about the Effects of Treatments2. Identifying patients’ and clinicians’ shared priorities for research about the effects of treatments: James Lind Alliance3. Explaining and illustrating the development of fair tests of treatments in health care: James Lind Library and Testing Treatments
  13. 13. To increase the focus of the therapeutic research agenda on questions and priorities shared by patients and clinicians.To promote Priority Setting Partnerships involving patients and clinicians to identify and promote their shared priorities for therapeutic research.To increase general awareness and understanding of the need to refocus the therapeutic research agenda.
  14. 14. Lester Firkins Chair, JLA Strategy & Development Group Sally Crowe Katherine CowanChair, JLA Monitoring & Editor, JLA Guidebook Implementation Group Patricia Atkinson Administrator, JLA Secretariat
  15. 15. Involving patients, carers and clinicians in research priority setting The JLA’s principles•Inclusive •Balance of perspectives •Accessible to all•Supportive •Recognising a range of capacities and skills•Transparent and democratic •Data sharing •Agreed protocol •Declaration of interests •Neutral facilitation •Communication and feedback
  16. 16. JLA Priority Setting PartnershipsCompleted Current•Asthma •Acne•Urinary incontinence •Childhood disability•Vitiligo •Dementia•Prostate cancer •Dialysis•Schizophrenia •Head and neck cancer•Type 1 diabetes •Inflammatory bowel disease•ENT aspects of balance •Lyme disease•Life after stroke •Multiple sclerosis•Eczema •Pressure ulcers•Tinnitus •Pre-term birth•Cleft lip and palate •Sight loss and vision
  17. 17. Research priority themes [across asthma, incontinence, vitiligo, eczema, stroke, prostate cancer, schizophrenia, aspects of balance, and type 1 diabetes]• Assessment of long-term effects (wanted and unwanted) of treatments• Assessment of safety and adverse effects of treatments• Assessment of complementary and non-prescribed treatments• Assessment of strategies to improve early diagnosis and treatments, and harmonisation of practice• Assessment of the effectiveness and safety of self- care
  18. 18. Questions relevant Appropriate design Accessible Unbiased and to clinicians & and methods? full publication? usable report? patients?Low priority questions Over 50% studies Over 50% of studies Over 30% of trialaddressed designed without never published in full interventions not reference to sufficiently describedImportant outcomes systematic reviews of Biased under-not assessed existing evidence reporting of studies Over 50% of planned with disappointing study outcomes notClinicians and Over 50% of studies results reportedpatients not involved fail to take adequatein setting research steps to reduce Most new researchagendas biases, e.g. not interpreted in the unconcealed context of systematic treatment allocation assessment of other relevant evidence 50 50 50 % % % 85% Research waste = over $85 Billion / year
  19. 19. Publication (2007) after registration (1999) Country Size Phase FunderRoss JS, Mulvey GK, Hines EM, Nissen SE, Krumholz HM (2009). Trial publication afterregistration in ClinicalTrials.Gov: a cross-sectional analysis. PLoS Med 6(9): e1000144.
  20. 20. “Studies that report positive or significant resultsare more likely to be published and outcomesthat are statistically significant have higher oddsof being fully reported.” PLoS ONE, August 2008;3:e3081
  21. 21. Alessandro Liberati
  22. 22. Because research results have notbeen made public……patients have suffered and diedunnecessarily and resources for healthcare and health research have beenwasted.
  23. 23. TGN1412 TGN 1412
  24. 24. What is the position of theAcademy of Medical Sciences?
  25. 25. 2006 letter to Prof John Bell,President, Academy of Medical Sciences
  26. 26. What should be done?The public needs to be madeaware of how the resources theyprovide for research are beingwasted.The public needs to hold theresearch community to account,and be critically involved inresearch, from agenda setting todissemination of results.
  27. 27. Programme of work of The James Lind Initiative1. Identifying and publishing uncertainties about the effects of treatments: UK Database of Uncertainties about the Effects of Treatments2. Identifying patients’ and clinicians’ shared priorities for research about the effects of treatments: James Lind Alliance3. Explaining and illustrating the development of fair tests of treatments in health care: James Lind Library and Testing Treatments
  28. 28. www.jameslindlibrary.org
  29. 29. Promote research on the effects of treatments……but only if it meets scientific and ethical principles
  30. 30. www.testingtreatments.org
  31. 31. “Bad Science introduces the basic scientific principles tohelp everyone become a more effective bullshit detector.”
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