Medical research: not just for researchers

1. Medical research: not just for researchers Dr Sophie Petit-Zeman Director of Public Dialogue Association of Medical Research Charities NHS R&D Forum Annual Conference May 9th 2005

2. Or is it?

3. Talk overview • Research matters: • Who funds research? • How is the charity sector involved? • How (and why) are the public and patients involved? • AMRC member charities • Database of Individual Patient Experiences (DIPEx) • James Lind Alliance

4. Funding for UK medical research • UK Government • European Community/Commission • Industry • Charities • Overseas governments • International agencies

5. UK government funding for medical research • Medical Research Council • Other research councils • NHS/Department of Health • Higher education funding councils • Policy research - non-’health’ government departments and agencies

6. Charity funding for UK medical research • Registered medical and health research charities • Unregistered charities • Other registered charities (non medical) • University and NHS charitable funds • Grant giving trusts and foundations • Overseas charities

7. Different types of medical research charities • Profession-led Arthritis Research Campaign - rheumatologists • Endowed Wellcome Trust • Patient/carer-led Alzheimer’s Society • Philanthropic Tenovus • Institutional Brain Research Trust • Scientist or departmental • Corporate Novartis Foundation • Stakeholder-based

8. The contribution of AMRC charities to UK medical research 112 member charities (2003/04) £634m spent in UK 3000 grants each year to more than 350 universities, research institutes and hospitals More than MRC or NHS

9. “I gave up hope of receiving a Genius (generous research council) grant years ago. Now I’m basically shooting for the less impressive Mediocrity (stingy charity) grant.”

10. Good news from DTI/MORI • Scientists working for charities and in universities, are far more likely to be valued as sources of information, and to be trusted to provide accurate information about scientific facts than those working for either government or industry. • More than 1 in 10 say they would least trust government scientists to provide accurate information about scientific facts – over twice the proportion that say this about scientists working for industry. Fewer than half a per cent say this of scientists working in universities or for charities.

11. Key characteristics of the charity sector in medical research • For public benefit/must maintain support • Broad range of stakeholders • Mainly specialist small players • Mainly fund in external facilities • Responsive mode funding • Must not be seen as or be tempted to become an alternative to government

12. Expenditure of the top five(on research in the UK 2003/04) • Wellcome Trust - £304m • Cancer Research UK - £160m • British Heart Foundation - £53m • Arthritis Research Campaign - £19m • Health Foundation - £14m • Accounts for 87% of total £634m

13. Where AMRC charities fund research

14. What does the AMRC do? • “… provide effective support and leadership for its members and the wider charity sector in medical research through the provision of information and guidance and a strong and credible representative voice.” • Identify and inform members on key issues • Develop appropriate positions and policies • Represent members to Government and others • Develop best practice and provide support and advice • Promote public awareness of medical research and the contribution of charity sector • Enable the research community to access accurate and reliable information on funding opportunities • www.amrc.org.uk

15. Key issues facing the sector • Public confidence. To foster faith in research, need engagement and dialogue. • Some key areas: • animals in medical research • human embryo research/stem cells • genetics • patient involvement • clinical trials

16. Do we trust scientists? “….it is very obvious that not many people know scientists, or how funding works….it is mainly grants from either charities or some such funding body that fund research into an area that may be of interest to that funding body…. the public as a whole does have a very wrong idea of scientists and what they do - they are not evil and secretive at all - it is just the majority of work that goes on is not interesting to those outside of the field.” BBC debate, 2002

17. Public and patient involvement in research • They are not the same thing….but ‘the public’ become patients, and vice versa, and….. • A member of ‘the public’ may be a patient too • Patient/public involvement can both happen at many stages of the research process • Carers matter too

18. Patient involvement • Patients as research subjects • Patients as ‘spokespeople’ – about the illness itself, or specific aspects • Patients setting the research agenda – from total involvement (Alzheimer’s Society Quality Research in Dementia) to some input • Patients doing the research - Tends to shift focus from medical research towards services • Patients influencing translation of research into practice - unites many of the above

19. Why involve patients? “It is crucial that we find ways of understanding why our patients do not act in what, to us, seems so clearly to be their best interests. Why, despite all our efforts, do our patients continue to smoke, why do they refuse hearing aids, why do they not take prescribed medication, why do they kill themselves? Perhaps because part of the meaning of health is that it should be defined, understood, and achieved on the patient's own terms.” Iona Heath, British Medical Journal, 21st November 1998.

20. Research is the cornerstone of evidence-based practice • ….but evidence-based practice isn’t everything….

21. Skulls of medical students showing circular incisions of trepanation used to insert EBM cubes. BMJ 2002;325:1496-1498

22. An EBM priest anointing a patient with evidence at the bedside BMJ 2002;325:1496-1498

23. The cutting edge of research… • ….is where the real people are. • “Researchers cannot assume that their own values and priorities apply to others who do not share their world” (Hilda Bastian, consumer advocate)

24. Examples of patient engagement • AMRC members: Alzheimer’s Society, Quality Research in Dementia; Multiple Sclerosis Society; Asthma UK • DIPEx (www.dipex.org) • James Lind Alliance (www.lindalliance.org)

25. What is DIPEx? • A multimedia resource based on interviews with patients about an illness or health issue • Each ‘module’  based on a qualitative research study • Research team at University of Oxford Department of Primary Health Care • A charity

26. DIPEx aims to: • identify questions that matter to people when they are ill or have a health-related problem • support and inform patients with a serious illness, their family and carers • be an educational resource for medical students, doctors, nurses and other health professionals • promote a more balanced encounter between patients and health professionals • give patient-centered perspectives to those who commission health services

27. DIPEx and AMRC • Patient opinions of research…..addressing some of the key issues – animals in research; embryo research; stem cells… • “The patient is the best advocate for research” (Lord Turnberg, AMRC scientific advisor)

28. James Lind Alliance Tackling treatment uncertainties together Jointly convened by INVOLVE, The Royal Society of Medicine, and The James Lind Library www.lindalliance.org

29. Why the JLA? • Acting with the best intentions, clinicians can do more harm than good • Clinical research is too often seen as ‘an optional extra’ • Do uncertainties considered important by clinicians AND patients influence the clinical research agenda?

30. JLA objectives • To increase the focus of the therapeutic research agenda on questions and priorities shared by patients and clinicians. • To promote working partnerships and collaborations between 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.

31. AMRC and the JLA • AMRC represented on JLA steering group • AMRC members: patient groups • Charity-funded researchers: clinician groups • JLA support for research development?

32. How will the JLA work? First, finding out which questions matter to patients and clinicians, by accessing: Question-answering services for patients [NHS Direct and NHS Direct Online, Patient Advice and Liaison Services (PALS), charity helplines, medical columnists….] Question-answering services forclinicians [NeLH Question Answering Service….] Systematic reviews and clinical guidelines [Cochrane Reviews, NICE, Clinical Evidence……] Registers of currently recruiting clinical trials [www.controlled-trials.com]

33. And this will yield……. A Database of Uncertainties about the Effects of Treatments (DUETs)…. which may in turn suggest the value of a clinical trial. But……

34. Are trials do-able? • “I need permission to give a drug to half of my patients, but not to give it to them all” • “The clinician who is convinced that a certain treatment works will almost never find an ethicist in his path, whereas his colleague who wonders and doubts and wants to learn will stumble over piles of them.” (Lancet editorial, 1990)

35. Regulation or red tape? • Regulation needs to be appropriate, not bureaucratic – 20 centre trial, adds 150 days to the study • Cost of clinical trials over last 12 months increased 1.8-24 times (preliminary data, Cancer Research UK) • Regulation needs to be relevant to non-profit sector as well as to industry • AMRC working with UK Clinical Research Collaboration on Regulatory and Governance workstream

36. Another question: • Is R&D seen as a threat, and not part of the core business of healthcare? …………..Why ask?

37. Because, according to the UKCRC: The Healthcare Commission consultation on standards for health: “Hardly mentions R&D at all” “What it does have to say is solely about governance”

38. Can patients help? • “…patients are generally told what research will be done with their personal data, or tissues, not what they and we will all lose if it is not done.” • “Informing and working with the public and patient groups may lead to a wider recognition of the problem and pressure for change.” (Warlow, Clin Med. Jan/Feb 05)

39. Doctor, patient, researcher…. we’re in it together • “…. we are human, and humans err. Despite outrage, despite grief, despite experience, despite our best efforts, despite our deepest wishes, we are born fallible and will remain so.” (Berwick, BMJ, 3rd Feb 2001)

40. Available from June 1st……….. • Doctor, what’s wrong? Making the NHS human again (Routledge)