Globalisation of the empowered health care consumer

1. Globalisation of the empowered health care consumer Richard Smith Editor, BMJ

2. 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

4. 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.”

5. Responsiveness of health care systems WHO studies

6. 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

7. 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

9. 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

10. Those who experience low responsiveness • Old • Women • Ethnic minorities • Indigenous populations

11. The most “disempowered” consumers • Prisoners • Substance abusers • Sex workers • Learning disabled • Asylum seekers • Homeless • Travellers

12. From industrial age to information age health care Remembering that many still have preindustrial health care

13. 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

15. Towards patient partnership

16. 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

17. 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

18. 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

19. 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.

20. 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.

21. Is moving to shared decisionmaking a radical idea?

22. 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."

23. 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

24. Examining the arguments against shared decision making

25. 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

26. 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

27. 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

28. 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

29. 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

30. 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

31. 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

32. Two studies

33. 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

34. 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?

35. 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

36. 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

37. Is this patient abuse?

38. Yes

39. 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

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

41. 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

42. A new contract with patients

43. 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

44. 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

45. 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

46. 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

47. 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

48. 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

49. 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

50. 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