Globalisation of the empowered health care consumer

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Globalisation of the empowered health care
consumer

• Richard Smith
• Editor, BMJ

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What I want to talk about

• Sick people the global picture
• Global stories
• Who has the most responsive health care
  systems?
• Drivers of a changing world
• From industrial age to information age health
  care
• Patient partnership
• Doctors and patients a new contract

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Global stories

• My father having a tonsillectomy in the 1930s
  Dont do that, you dirty boy.
• Colleague with severe psoriasis as a child tied
  to the bed in the 1950s
• Asked to see a boy rendered paraplegic in a car
  crash in Sumatra in 1979 had severe pressure
  sore no help possible
• Ward round with a surgical friend in India in
  1998 I cant operate for two days as Im going
  to Sri Lanka. Tell him we need to do some more
  tests.

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Responsiveness of health care systems

• WHO studies

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Components of responsiveness

• Dignity being treated as a person not a patient
• Autonomy being able to chose for yourself
• Confidentiality
• Prompt attention speedy access to care
• Quality of basic amenities cleanliness, etc
• Choice of care provider
• Access to social care supports

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Several questions asked on each component
autonomy

• How often are patients provided with information
  on alternative treatment options?
• How often are patients consulted about their
  preferences on different treatment options?
• How often is patient consent sought before
  testing or starting treatment?
• Never/Sometimes/Usually/Always

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Position and scoreon responsiveness

• 1 United States 8.10
• 2 Switzerland 7.44
• 5 Germany 7.10
• 16 France 6.82
• 20 Singapore 6.70
• 26 United Kingdom 6.51
• 108 India 5.02
• 191 Somalia 3.69

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Those who experience low responsiveness

• Old
• Women
• Ethnic minorities
• Indigenous populations

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The most disempowered consumers

• Prisoners
• Substance abusers
• Sex workers
• Learning disabled
• Asylum seekers
• Homeless
• Travellers

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From industrial age to information age health care

• Remembering that many still have preindustrial
  health care

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Drivers of change

• Rise of the resourceful patient
• Information technology, particularly the
  internet
• Growing gap between what could be done and what
  can be afforded
• In Scotland where I was born death was viewed as
  imminent. In Canada where I trained it was seen
  as inevitable. In California, where I live now,
  its considered optional. Ian Morrison
• Science, particularly genetics
• Big ugly buyers
• Increasing medicalisation
• Globalisation
• Rise of ethical issues--autonomy to the fore

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Towards patient partnership
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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

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The doctor patient relationship 1995

• 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

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The doctor patient relationship 2001

• The idea that doctors need complex information
  and patients simple information is just plain
  wrong. It doesnt make any sense to give detailed
  information to generalists about a condition they
  probably wontt see even once in a lifetime. The
  Daily Mail a tabloid newspaper for the public
  will do them fine. But patients who have a
  chronic condition may want every last drop of
  information--whatever is available on the
  hottest, most detailed websites. The patients are
  getting smarter than the doctors.
• Muir Gray and Ian Morrison translated by
  Richard Smith

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Models of decision making in health care

• 1 Paternalistic model
• Doctor knows best
• Patient consents to the treatment advocated by
  the doctor
• 2 Professional as agent
• Doctor incorporates patient preferences into
  decision but still makes the decision.

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Models of decision making in health care

• 3 Shared model
• Both the process of decision making and the
  outcome--the decision itself-- are shared
• 4 Informed consent model
• Doctor provides technical information
• Patient alone decides on the treatment.

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Is moving to shared decisionmaking a radical idea?
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Ciceley Saunders

• "Instead of ignoring patients who are dying,
  filling them full of opiates, and leaving them in
  a corner of the ward to get constipated and
  develop bed sores we should talk to them,
  palliate their symptoms, and titrate their dose
  of drugs so that they can function fully without
  being in pain."

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How could patients ever come second?

• How did doctors reach the point where patients
  are thought of as anything less than equal
  partners?
• How is it that doctors sometimes see patients
  almost as "the enemy," people who demand too much
  and make their lives a misery?
• Why are doctors reluctant to accept the
  conclusion that only patients can define the
  quality of care?
• Doctors bring their knowledge, experience, and
  skills to any interaction, but the patient is the
  expert on him or herself

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Examining the arguments against shared
decision making
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Patients dont want to make decisions

• Many studies show that patients want more
  information, but this is not the same as saying
  that they want more participation in decisions
• A series of (mainly US) studies show that a third
  to two thirds of patients want to participate in
  decision making

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Survey of 210 US patients with hypertension and
the 50 physicians they consulted

• 41 of patients wanted more information
• 53 of patients wanted to participate in
  decisions about treatment
• Clinicians underestimated patients preferences
  for discussion about therapy in 29 of cases
• Clinicians overestimated patients preferences for
  discussion about therapy in 11 of cases

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Information about risk and uncertainty can be
harmful

• Most studies find little difference in reported
  side effects between those given relevant
  information and those who are not
• Three studies looking specifically at involving
  patients with breast cancer in decision making
  found no ill effects
• In fact there is expanding information that
  shared decision making will be beneficial

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Its too difficult, costly, and time consuming
to provide all relevant information

• Certainly a common belief, but little hard
  evidence.
• Has led to attempts to develop high quality
  information for patients using computers
• Generally appreciated by patients--and often
  leads to less treatment
• Despite the growing volume of information
  produced for patients, evidence based information
  about treatment choices that is accessible and
  not patronising is hard to find. Angela Coulter

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Some patients will demand too much, thus
increasing inequalities

• In factmany patients want less treatment not more
• 406 men were shown the interactive video for
  patients with prostate disease
• 27 of those who opted for surgery before decided
  against afterwards
• 1 changed towards surgery
• Patients may turn out to more risk averse than
  their doctors.
• Not surprising--they are the ones who pay the
  consequences

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The evidence on patient partnership

• The topic of "Patients as Partners" is, in my
  opinion, perhaps the single most pregnant topic
  in the future of health care for the next decade.
  The "bottom line" finding is regular When
  patients become coequal with their care providers
  in controlling care, making decisions, and
  treating themselves with coaching, outcomes
  improve, costs fall, satisfaction rises, and even
  physiological measures look better. Don Berwick,
  president of the Institute for Healthcare
  Improvement

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The evidence on patient partnership

• I agree with much of what Don Berwick says but
  he's overoptimistic about the nature and quality
  of the scientific evidence. There are very few
  good randomised controlled trials evaluating the
  effects of involving patients and those that have
  been done are generally too small to show
  anything useful. The few existing systematic
  reviews are generally disparaging about the
  quality of the evidence. Very little work has
  been done to investigate cost-effectiveness.--Ange
  la Coulter, chief executive of Picker Europe

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Two studies
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Preferences for screening for colon cancer

• 100 patients aged 50-75 from California were
  asked about their preferences.
• 93 had been screened previously.
• Patients were given full information on different
  methods of screening for colon cancer nothing,
  fetal occult blood, flexible sigmoidoscopy
  bariurm enema, colonoscopy

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Preferences for screening for colon cancer

• Patients were asked
• 1. Which option would you chose?
• 2. How likely would you be to undergo each of
  these?
• 3. Would you have this test if recommended by the
  physician?

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Preferences for screening for colon cancer

• Given good evidence based information patients
  make very different choices
• Patients will tend to go along with what doctors
  advise, over-riding their own preferences

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Preferences for screening for colon cancer

• Suppose these same 100 patients had not received
  this information and were instead cared for by a
  physician who routinely performs flexible
  sigmoidoscopy because he considers it the best
  test. According to these data, fully 87 of the
  patients would undergo a procedure other than the
  one they would prefer if properly informed.
• Steve Woolf, primary care physician

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Is this patient abuse?
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Yes
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Self management of asthma

• 115 patients with mild to moderately severe
  asthma in Finland
• Randomised to self management or traditional
  treatment
• Personal education on asthma - very detailed
• Physiotherapeutic counselling
• Guided asthma self management - recorded peak
  expiratory flow and modified treatment or in
  certain circumstances contacted the doctor

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Traditional management

• Advice on using inhalers
• General information in the clinic
• (Did not have peak flow meters)

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Results self management relative to traditional
management

• Fewer unscheduled visits to doctor
• Fewer days off work
• Fewer courses of antibiotics
• Fewer courses of prednisolone
• Higher quality of life score

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A new contract with patients
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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

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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

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Results of the bogus contract

• Disappointed, confused, misled, and sometimes
  angry patients
• Infantilisation of patients
• Unhappy, scared, defensive doctors
• People take poor care of themselves, imagining
  that doctors can put them back together
• Self management is underused
• A lack of reality all round

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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

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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

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Conclusions

• For the privileged the relationship between
  patients and physicians and health care systems
  is changing fundamentally
• Many people in the world live in absolute
  poverty, have no access to health care, or have
  access only to unresponsive health care systems
• WHO has rated the responsiveness of health care
  systems--so contributing to a process that will
  increase responsiveness

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Conclusions

• Even in countries with responsive health care
  systems there are marginalised groups--like
  prisoners or the homeless--who receive
  unresponsive services
• We are changing from industrial age to
  information age health care
• Self care will become steadily more important

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Conclusions

• Patients can access the same information as
  doctors
• Some patients are smarter than the doctors
• Partnership with patients may lead to better
  outcomes, higher satisfaction, and lower costs
• The existing contract between doctors and
  patients is bogus and needs replacing