Transcript Globalisation of the empowered health care consumer

Globalisation of the
empowered health care
consumer
Richard Smith
Editor, BMJ
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
Global stories
• My father having a tonsillectomy in the
1930s: “Don’t 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 can’t operate for two
days as I’m going to Sri Lanka. Tell him
we need to do some more tests.”
Responsiveness of
health care systems
WHO studies
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
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
Position and score
on responsiveness
•1
•
•
•
•
•
•
•
2
5
16
20
26
108
191
United States
Switzerland
Germany
France
Singapore
United Kingdom
India
Somalia
8.10
7.44
7.10
6.82
6.70
6.51
5.02
3.69
Those who experience
low responsiveness
•
•
•
•
Old
Women
Ethnic minorities
Indigenous populations
The most “disempowered”
consumers
•
•
•
•
•
•
•
Prisoners
Substance abusers
Sex workers
Learning disabled
Asylum seekers
Homeless
Travellers
From industrial age to
information age health
care
Remembering that many
still have preindustrial
health care
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, it’s considered optional.” Ian Morrison
• Science, particularly genetics
• Big ugly buyers
• Increasing medicalisation
• Globalisation
• Rise of ethical issues--autonomy to the fore
Towards patient
partnership
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
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 won’t be able to
play the game in the same way.
Tom Ferguson
The doctor patient
relationship 2001
• The idea that doctors need complex
information and patients simple information is
just plain wrong. It doesn’t make any sense to
give detailed information to generalists about a
condition they probably won’tt 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
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.
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.
Is moving to shared
decisionmaking a
radical idea?
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."
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
Examining the
arguments against
shared decision making
Patients don’t 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
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
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
It’s 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
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
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
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.--Angela
Coulter, chief executive of Picker Europe
Two studies
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
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?
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, overriding their own preferences
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
Is this
patient
abuse?
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
Traditional management
• Advice on using inhalers
• General information in the clinic
• (Did not have peak flow meters)
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
A new contract with
patients
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
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
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
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
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
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
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
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