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 isnt 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 ONeills
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
• Its 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
  wont 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 peoples 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 arent 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 Lets just wait and see
• Say something reassuring Im sure that
  theres 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 isnt 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 DArcy 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 DArcy 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.