Aligning Incentives for Patient Engagement: Enabling Widespread Implementation of Shared Decision Making May 23, 2013 Angela Coulter, Informed Medical Decisions Foundation Dominick Frosch, Gordon and Betty Moore Foundation Floyd J. Fowler, Informed Medical Decisions Foundation

1. Wo r k s h o p o n P a t i e n t E n g a g e m e n t
Aligning Incentives for Patient
Engagement
May 23, 2013

2. W h y i s i t i m p o r t a n t ?
Engaging Patients
Angela Coulter
Director of Global Initiatives
May 2013

3. Healthcare Has Got to Change
3

4. What we Have Learnt
Traditional practice styles…….
• Create dependency
• Discourage self-care
• Ignore preferences
• Undermine confidence
• Do not encourage healthy
behaviours
• Lead to fragmented care

5. Informed, Empowered Patients
Have the knowledge, skills and confidence to
manage their own health and healthcare,
And they……
• Make healthy lifestyle choices
• Make informed and personally relevant
decisions about their treatment and care
• Adhere to treatment regimes
• Experience fewer adverse events
• Use less costly healthcare
Health Affairs Feb 2013

6. Sharing Information
6

7. Clinician
• Diagnosis
• Disease aetiology
• Prognosis
• Treatment options
• Outcome probabilities
Patient
• Experience of illness
• Social circumstances
• Attitude to risk
• Values
• Preferences
Two Sources of Expertise

8. Sharing Decisions
Shared decision making: A process in which clinicians and patients
work together to select tests, treatments, management or support
packages, based on clinical evidence and the patient’s informed
preferences.

9. Harms
minimized
Benefits
exaggerated
Information About Treatments is Often
Unbalanced

10. Poor decision quality
Patients:
unaware of treatment or
management options and
outcomes
Clinicians:
unaware of patients’
circumstances and
preferences
Mulley et al, King’s Fund, 2012
The Silent Misdiagnosis

11. Co-Producing Health

12. Working with Families
12

13. Person-Centred Coordinated Care
13
“I can plan my care with
people who work together to
understand me and my
carer(s), allow me control, and
bring together services to
achieve the outcomes
important to me.”
National Voices May 2013

14. Challenging Entrenched Attitudes
• “We do it already”
• “Our patients don’t want
it”
• “No evidence it works”
• “No time to do it”

15. 15
Shared decision
making
Personalised
care planning
Coordinated
treatment/care
Shared records
Supporting
behaviour
change
Follow-up and
review
Patient and
provider
working
together to
co-produce
health
Patient
decision aids
Staff training
Information
prescriptions
Patient
education
Health
coaching
Measuring
outcomes
Patient
access to
EMRs
Measuring
experience
Risk
stratification
Self-help
and peer
support
Social
marketing
Integrated
team
working

17. Angela Coulter, MSc, PhD
May 2013
A l i g n i n g I n c e n t i v e s f o r P a t i e n t E n g a g e m e n t
Patient Engagement Workshop

18. 18
Our Panelists

19. Oregon Rural Practice-based
Research Network
19

20. Dartmouth-Hitchcock Medical Center
20

21. PHMC Nursing Network
21

22. How patients experience engagement
when incentives are misaligned
Dominick L. Frosch, PhD
May 23, 2013

23. A set of beliefs and behaviors by patients, family members,
and health professionals and a set of organizational policies,
procedures and interventions that ensure both the inclusion of
patients and families as central members of the healthcare
team and active partnerships with providers and provider
organizations.
Adapted from Maurer M, Dardess P, Carman, KL, et al. Guide to Patient and Family Engagement: Environmental Scan
Report. (Prepared by American Institutes for Research under contract HHSA 290-200-600019). AHRQ Publication No. 12-
0042-EF. Rockville, MD: Agency for Healthcare Research and Quality; May 2012.
Defining patient and family engagement

24. What patients want from their healthcare providers
“I do not regard my doctor as my savior. What I
want them to be is my friendly native guide
through this jungle of decisions and
a full partner in executing that decision.”
67 year-old Male focus group participant
Frosch, May, Rendle, Tietbohl & Elwyn, 2012; Health Affairs

25. Patient’s desire for shared decision making is increasing
• Numerous surveys have assessed patient’s desire for
shared clinical decision making.
• Findings from these studies are sometimes used to
assert that not all patients want to participate in making
choices about their care.
• But the desire for participation is increasing:
• In studies prior to 2000, 50% of respondents
preferred SDM.
• In studies after 2000, 71% of respondents preferred
SDM.
Chewning et al, 2012. Patient Education & Counseling

26. Present day reality: One patient’s story
Patient saw physician for annual physical exam.
 MD provided decision support intervention (DESI) on colon cancer
screening.
 Patient watched DESI, read booklet, reviewed screening options.
Patient contacted physician via online patient portal.
 Not high risk, appropriate candidate for stool test.
 Patient requested stool test option.
 Physician refused: “We only believe in 2 options: colonoscopy or flexible
sigmoidoscopy”.
Patient confused, unsure what to do and indicated she was
unwilling to assert her preferences and disagreement.
Lin, Trujillo & Frosch, 2012; Archives of Internal Medicine

27. I think I prefer this option…

28. Understanding the patient perspective
• Focus group study (N=48; age 40+) focused on 3 key
behaviors necessary for SDM:
–Asking questions
–Discussing preferences
–Disagreeing with a recommendation
• First two behaviors are for exchanging information.
• Disagreeing may be necessary if a recommendation is
incongruent with patient preferences.
• To provide context about preference sensitive decisions,
participants first saw excerpt of a decision aid.

29. Participant characteristics
Number Percent
Mean age (St. Dev), years 64.7 (12.1)
Gender
Male 18 37.5
Female 30 62.5
Marital status
Married or living as married 31 64.6
Never Married 3 6.3
Widowed 4 8.3
Divorced 10 20.8
Ethnicity
African American 1 2.1
Caucasian 43 89.6
Asian/Pacific Islander 4 8.3
Education
High school or less 1 2.1
Some college 9 18.8
College graduate 9 18.8
Some Graduate School 7 14.6
Completed Graduate School 22 45.8
Income
$50,000 or less 5 20.9
$50,001 to $75,000 9 18.8
$75,001 to $99,999 8 16.7
$100,000 or more 19 39.6
No Answer 2 4.2

30. Theme 1: Conforming to socially sanctioned roles
“If I were to do that I would think…is the guy going to
be pissed at me for not doing what he wanted? …is it
going to come out in some other way that’s going to
lower the quality of my treatment? …will he do what I
want but….resent it and therefore not quite be as
good…or in some way…detrimental to my quality of
care.” (Respondent #36, Male, Age 64)

31. Theme 2: Authoritarian physicians
“I mean I ended up apologizing, saying…I hope I didn’t
upset you by saying I don’t want surgery. It isn’t that I
don’t trust you or like you, I just need time. But I was…
backpedaling and saying… I hope you're not mad at me”.
(Respondent # 3, Female, Age 69)

32. Theme 3: Patients Work to Fill Information Gaps
“I wanted multiple sources…I didn’t trust one
particular source, and so I did my own research, I
talked to other people who had been through it, I
talked to other doctors besides the urologist I was
dealing with…I asked for a referral for a second
opinion...the only way you get that’s by doing your
own work.” (Respondent #56, Male, Age 71)

33. From qualitative to quantitative
Informed by qualitative research, we developed theory-
based survey items (N=1,340) to assess:
 intentions for communicating with a physician
about coronary artery disease treatment options.
Three tasks/behaviors:
• Asking questions
• Discussing preferences
• Disagreeing with a recommendation
 outcome expectancies and normative beliefs.
Adams, Elwyn, Légaré & Frosch, 2012; Archives of Internal Medicine

34. Most people don’t feel comfortable disagreeing with a
physician’s recommendation
N=1340, p<.0001
93.1% 94.0%
14.0%
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
Would ask questions Would discuss
preferences
Would disagree

35. People fear that disagreeing will lead to them being viewed as
a “difficult patient”
N=1340, p<.0001
11.5%
14.1%
47.6%
0.0%
5.0%
10.0%
15.0%
20.0%
25.0%
30.0%
35.0%
40.0%
45.0%
50.0%
Asking questions Discussing preferences Disagreeing
Willleadmetobeingviewedasadifficult
patient

36. Conclusion
• In an environment in which incentives are not aligned
for patient engagement:
• Participants had little difficulty envisioning
exchanging information with their physicians.
• But they were much less likely to envision
disagreeing with a preference incongruent
recommendation.
• Participants felt vulnerable and dependent on the
goodwill of their physicians.
• New approaches are needed to signal to healthcare
providers that patient engagement is important,
expected and valued.