1. Patient’s Role in Decisions HINF 371 - Medical Methodologies Session 22

2. Objective To understand the role of patients in medical decision making To understand the role of patients in medical decision making To discuss/explore technology that would enable more active participation To discuss/explore technology that would enable more active participation

3. Reference Jimison HB and Sher P p (2000) Chapter 13: Advances in Presenting Health Information to Patinets, in Decision Making In Health Care: Theory, Psychology and Applications, Cambridge University Press, USA Jimison HB and Sher P p (2000) Chapter 13: Advances in Presenting Health Information to Patinets, in Decision Making In Health Care: Theory, Psychology and Applications, Cambridge University Press, USA McKinstry, B (2000) Do patients wish to be involved in decision making in the consultation? A cross sectional survey with video vignettes, BMJ, Vol:321; pp:867-871 McKinstry, B (2000) Do patients wish to be involved in decision making in the consultation? A cross sectional survey with video vignettes, BMJ, Vol:321; pp:867-871 Kravits RL and Melnikow J (2001) Engaging patients in medical decision making, BMJ, Vol:323, pp:584-585 Kravits RL and Melnikow J (2001) Engaging patients in medical decision making, BMJ, Vol:323, pp:584-585 Holbrooks A, Labiris R, Goldsmith CH, Ota K, Harb S, Sebaldt RJ (2007) Influence of decision aids on patient preferences for anticoagulant therapy: a randomized trial, CMAJ, 176(11), pp 1583-7 Holbrooks A, Labiris R, Goldsmith CH, Ota K, Harb S, Sebaldt RJ (2007) Influence of decision aids on patient preferences for anticoagulant therapy: a randomized trial, CMAJ, 176(11), pp 1583-7

4. Control: Who really makes the decisions Acuity “Control” The “System” Patient/Family 0 LowHigh 100 1.Control – who makes the final decision influencing outcome? 2.Influences – family, friends, co-workers, religion, values, money 3.Real opportunity to influence health costs/outcomes – influence on the choices made – behavioral change 4.Current model – tests, diagnosis, treatment (meds or procedures) Drs. Eby and Kilo (2006) Presentation “Inconvenient Truths” in 2006 IHI National Forum

5. Driver of patient participation Political trends – experienced consumers – patients’ have rights Political trends – experienced consumers – patients’ have rights Ethics – autonomy versus beneficence Ethics – autonomy versus beneficence Research on health services – involvement in decision making results in better health outcomes Research on health services – involvement in decision making results in better health outcomes

6. Can patients decide? Can patients take a leading role in making treatment decisions Can patients take a leading role in making treatment decisions Uncertain scientific evidence Uncertain scientific evidence Value of health status in patients’ eyes Value of health status in patients’ eyes Patients’ attitude of risk (probability, severity, timing of an adverse outcome) Patients’ attitude of risk (probability, severity, timing of an adverse outcome) Do they want to? Do they want to? What if doctors and public health professionals don’t like their choices What if doctors and public health professionals don’t like their choices Less effective treatment options Less effective treatment options Less cost-effective treatment options Less cost-effective treatment options

7. Already deciding - Passively Mild and Moderate Hypertension Mild and Moderate Hypertension Value medical treatment less than doctors Value medical treatment less than doctors More distressed with side effects More distressed with side effects May result in strokes and heart attacks May result in strokes and heart attacks 50-65 percent of chronic disease patients adhere treatment 50-65 percent of chronic disease patients adhere treatment

8. Do they want to? Breast cancer study of 1012 women Breast cancer study of 1012 women 22% want to select treatment 22% want to select treatment 44% want to collaborate 44% want to collaborate 34% delegated 34% delegated 400 patients watched videos of shared and direct approach in treatment decisions 400 patients watched videos of shared and direct approach in treatment decisions Physical problems – delegation Physical problems – delegation 61 years older – delegation 61 years older – delegation Higher social class – shared Higher social class – shared Smoking – shared Smoking – shared Not generalizable so doctors need to assess. Not generalizable so doctors need to assess. But everybody wants information. But everybody wants information.

9. Provision of Health Information Higher ratings of patient satisfaction linked to greater information exchange Higher ratings of patient satisfaction linked to greater information exchange Access to information enables patients to be more active participants in the treatment process and better outcomes Access to information enables patients to be more active participants in the treatment process and better outcomes Health education is part of all health professional – patient/client communication Health education is part of all health professional – patient/client communication Self-efficacy and power Self-efficacy and power Powerlessness a broad risk factor for disease Powerlessness a broad risk factor for disease

10. Objectives Empowerment Empowerment Self-efficacy Self-efficacy Goal setting Goal setting Problem solving Problem solving Connections Connections Adherence – compliance Adherence – compliance Failure to take medications Failure to take medications Failure to keep appointments Failure to keep appointments Failure to follow recommended diet Failure to follow recommended diet Failure to follow preventive health practices Failure to follow preventive health practices

11. Types of information Wellness and Prevention (nutrition, exercise, first aid) Wellness and Prevention (nutrition, exercise, first aid) Diseases, screening, triage, tests and treatments Diseases, screening, triage, tests and treatments Informed consent and advance directives Informed consent and advance directives Medical Histories, home medical records, and preparation of office visits Medical Histories, home medical records, and preparation of office visits Shared decision making Shared decision making Social support and communication with others Social support and communication with others Choosing a doctor, hospital, health insurance Choosing a doctor, hospital, health insurance

12. Models of information transfer Brochures and pamphlets Brochures and pamphlets Advantages Advantages Point of Care information Point of Care information Refer when needed Refer when needed Good for contact information Good for contact information Disadvantages Disadvantages Stand-alone Stand-alone Needs to be concerned with cultural sensitivity, language, readibility, literacy levels Needs to be concerned with cultural sensitivity, language, readibility, literacy levels

13. Models of Information Transfer Models of Information Transfer Media Media Advantages Advantages Widely available Widely available Lower cost Lower cost Disadvantages Disadvantages Might be biased Might be biased Flavour of the month Flavour of the month Alarmist Alarmist Telephone (pre- recorded information, advice lines, reminders and surveys) Advantages Less costly Ability to triage Disadvantages Might be frustrating Invasion of privacy

14. Models of Information Transfer Video tapes Video tapes Advantages Advantages Good medium for education and training Good medium for education and training Serves to more senses Serves to more senses Disadvantages Disadvantages Harder and probably more expensive to produce Harder and probably more expensive to produce Might be biased Might be biased

15. Models of Information Transfer Computers and Telecommunications (commercial software) Computers and Telecommunications (commercial software) Advantages Advantages Medium that can integrate all of the above Medium that can integrate all of the above Interactive Interactive Supports individualization Supports individualization Support groups Support groups Internet – viewer beware – (e-mailing, mailing lists, FTPs, listservers, Chat, etc.) Internet – viewer beware – (e-mailing, mailing lists, FTPs, listservers, Chat, etc.) Disadvantages Disadvantages Literacy and access Literacy and access

18. Principles of Presentation and Interactivity Interface design Interface design Tailoring health information Tailoring health information Incorporating preferences Incorporating preferences

19. Barriers of Access Cultural Cultural Language Language Reading level Reading level Level of education and medical expertise Level of education and medical expertise

20. Interface design Give the user control Give the user control Reduce the user’s memory load Reduce the user’s memory load Provide immediate feedback and the option of help any point Provide immediate feedback and the option of help any point Use familiar metaphors – windows file folders Use familiar metaphors – windows file folders Keep the interface consistent Keep the interface consistent Adapt to user Adapt to user Self-paced instruction Self-paced instruction Ability to repeat, review and receive coaching Ability to repeat, review and receive coaching Tailor language, reading level, and medical experience Tailor language, reading level, and medical experience Tailor based on health risk assessment Tailor based on health risk assessment Provide automated, tailored record of patient understanding and education Provide automated, tailored record of patient understanding and education