Is transparency is fundamental to quality in health care?

1. Is transparency is fundamental to quality in health care? Richard Smith Editor, BMJ www.bmj.com/talks

2. What I want to talk about • What is transparency? • The problem of the absence of transparency • Why the drive to transparency? • What is the relationship between transparency and trust? • Ingredients of trust in 2004

3. What I want to talk about • Things to be transparent about in health care • Examples from intensive care • Data on performance • Admission to intensive care • Honesty with individual patients • Conclusions • An example from literature of the danger of transparency

4. Defining transparency • Transparency: the quality of being transparent • Able to be seen through, clear, pellucid; pervious to rays; easily detected, understood; obvious, evident; ingenuous, frank; shining through

5. The importance of transparency • “What isn’t transparent is assumed to be biased, corrupt, or incompetent until proved otherwise.” • “What have they got to hide?”

6. Examples are, I suggest, endless • Whether Tony Blair had his young son vaccinated against MMR • Failure on the part of regulatory authorities to disclose the risk that some antidepressants, particularly in high dose, might increase the risk of suicide • Conflicts of interest not disclosed in relation to the Lancet paper on a possible link between MMR and autism • The legal reasons for going to war in Iraq

7. Quotes in the discussion on the drive for transparency and the relationship between transparency and trust come from Onora O’Neill’s A question of Trust, published by Cambridge University Press in 2002

8. Why the drive for transparency? • “Every day we read of untrustworthy action by politicians and officials, by hospitals and exam boards, by companies and schools.” • “Mistrust and suspicion have spread across all areas of life…”

9. Why the drive for transparency? • We believe that increased accountability will help--and accountability depends in large part on information and transparency • “The efforts to prevent abuse of trust are gigantic, relentless, and expensive; their results are always less than perfect.”

10. Why the drive for transparency? • Increased transparency is much easier in the age of the internet • It’s increasingly difficult to hide anything anyway • Plus people and patients are fed up with being patronised

11. The doctor patient relationship 1871 • “Your patient has no more right to all the truth you know than he has to all the medicines in your saddlebags...He should get only just so much as is good for him.” • Oliver Wendell Holmes

12. The doctor patient relationship 2004 • “The whole structure of medicine has been based on the assumption that physicians have the current information and patients do not. The bottom line is, the consumer will have virtually all the information the professionals have. This is comparable to the way communism fell. Once people start getting in good communication you won’t be able to play the game in the same way.” • Tom Ferguson, 1995

13. What is the relationship between transparency and trust? • There can be no such thing as complete transparency • “At some point we just have to trust” • As transparency has advanced trust seems to have receded • “If we want to restore trust we need to reduce deception and lies rather than secrecy”

14. What is the relationship between transparency and trust? • Increased transparency may lead to increased deception because people may be careful in what they write or say if they know everything is to be made public--using evasions, hypocrisies, and half-truths • They may also resort to spin

15. What is the relationship between transparency and trust? • “Well placed trust grows out of active inquiry rather than blind acceptance” • People need information they can check and assess its accuracy for themselves • This is demanding

16. Ingredients of trust in 2004 • If you start from a position of trust, then an absence of evidence of being deliberately deceived or misinformed • Accurate, understandable, interpretable, unspun, checkable information • Capacity to understand, interpret, and check the information

17. Ingredients of trust in 2004 • Repeated checking of the information without any discovery of deliberate deception • Prompt admission of error by the trusted source

18. Things to be transparent about in health care • The inadequacy of our evidence base • Our ignorance and impotency • The dangers of modern health care • The inevitability of rationing care • The processes of licensing of drugs and equipment • Conflicts of interest • How policy decisions are made

19. Things to be transparent about in health care • Decisions on allocation of resources--at all levels • Performance of doctors, nurses, other health professionals, practices, hospitals • Colleagues who are dangerous • How the GMC and other similar bodies make their decisions • Peer review • Do not resuscitate decisions

20. Things to be transparent about in health care • The problems of screening • Drug side effects • What happens to people’s removed organs • Later testing of stored body specimens without consent • The costs of different interventions • Uncertainty in relation to individual patients and populations

21. All this may not be universally popular • “Humankind cannot bear very much reality” • TS Eliot.

22. Transparency about performance • “Measurement should be for learning not judgement”--therefore it should be private • Measuring performance is hard and easily gamed • But it cannot now be avoided, and politicians believe that the use of league tables and targets will improve performance---although I hope too that they recognise the ease with which they can induced perverse behaviour--like not operating on the most sick

23. “Find me the best doctor” • Finding a good doctor is as hard as finding a good lover • The data are poor, and all you have to go on is reputation • And, as Mark Twain said, “Once you have a reputation for being an early riser you can sleep into noon every day.”

24. “Find me the best doctor” • Ask the editor of the BMJ • I know who publishes a lot--but what is the relationship between publication and performance? More likely perhaps to be inverse than direct • The doctor who doctors go to--but doctors’ families are famously looked after

25. “Find me the best doctor” • The data available right now on performance are non-existent on most aspects of care, weak on some, and positively misleading on many

26. Statistical inanities • “Eventually everybody will receive the best possible care for their cancer” • Mike Richards, Cancer Tzar, Radio 4, March 2004 • “By 2010 we expect everybody to be above average.” • Education expert

27. But what is a good doctor? • Is it technical skills, a way with people, or some deep--almost spiritual--understanding of life, death, and the ways of God? • Do you want your doctor to resemble a plumber, a stand up comedian, a priest, or a philosopher? • Probably you want different competencies for different circumstances

28. Measuring and disclosing performance • If we aren’t sure what a good doctor is how can we possibly measure performance in a transparent, meaningful, checkable way

29. Who will be admitted to intensive care? • Not everybody who might conceivably benefit from intensive care can get it • So who should? • Who should decide? • Should there be explicit criteria?

30. What might the criteria be for admitting patients to intensive care? • Capacity to come out alive • Capacity to benefit • Age • Clinical need--how does that relate to capacity to benefit? • “Worthiness”--dependent children, importance of position • Cause of problem--caused, for example, by medical negligence

31. Transparency in admission to intensive care • Baraganwath Hospital has explicit criteria that are mostly about the capacity to benefit • The result is that many of the patients are young men with gun shot wounds--people who may be thought “unworthy”

32. Transparency in admission to intensive care • Lack of transparency may lead to anxieties about unfairness (“bias” or “corruption”) • Explicit criteria allows society wide debate on how limited resouces should be allocated

33. Being transparent with patients

34. The bogus contract: the patient's view • Modern medicine can do remarkable things: it can solve many of my problems • You, the doctor, can see inside me and know what's wrong • You know everything it's necessary to know • You can solve my problems, even my social problems • So we give you high status and a good salary

35. The bogus contract: the doctor's view • Modern medicine has limited powers • Worse, it's dangerous • We can't begin to solve all problems, especially social ones • I don't know everything, but I do know how difficult many things are • The balance between doing good and harm is very fine • I'd better keep quiet about all this so as not to disappoint my patients and lose my status

36. The new contract: both patients and doctors know • Death, sickness, and pain are part of life • Medicine has limited powers, particularly to solve social problems, and is risky • Doctors don't know everything: they need decision making and psychological support

37. The new contract: both patients and doctors know • We're in this together • Patients can't leave problems to doctors • Doctors should be open about their limitations • Politicians should refrain from extravagant promises and concentrate on reality

38. The doctor and the patient • The patient is old, sick, vulnerable, anxious, and worried • He asks the doctor a question; the doctor is very uncertain about the answer • The question might be: What is causing this pain? Might it be cancer? Could it kill me?

39. What should the doctor do? • Share her uncertainties, which are likely to be many and complex? • Evade the question: “Let’s just wait and see” • Say something “reassuring”: “I’m sure that there’s no need to worry.”

40. Remember that in circumstances of uncertainty the alternative to sharing the uncertainty may be “false certainty,” which might be called lying; and deception is inimical to trust

41. Conclusions • “What isn’t transparent is assumed to be biased, corrupt, or incompetent until proved otherwise.” • There is a need for greater transparency in most parts of health care--we cannot have high quality care without it • Transparency can never be complete

42. Conclusions • We need both trust and transparency • Greater transparency can lead to greater trust--but it might undermine it through promoting half truths and spin • Perhaps more important than the pursuit of complete transparency is the energetic avoidance of deception • We might all benefit from a new, more open, more adult contract between doctors and patients

43. The dangers of transparency: Mr D’Arcy proposes to Elizabeth Bennet • “You must allow me to tell you how ardently I admire and love you.” • “But disguise of every sort is my abhorrence.”

44. The dangers of transparency: Mr D’Arcy proposes to Elizabeth Bennet • …but there were feelings beside those of the heart to be detailed, and he was not more eloquent on the subject of tenderness than of pride. His sense of her inferiority--of its being a degradation--of the family obstacles which judgement had always opposed to inclination were dwelt on with a warmth …[that]...was very unlikely to recommend his suit.”