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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

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  • We believe that a key part of the solution is a supportive healthcare system that works to engage patients and families in all aspects of their care and in designing a better performing healthcare system. Our working definition of patient and family engagement, adapted from work by Maurer and colleagues at the American Institutes for Research is:READ WORKING DEFINITION.


  • 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
  • 16. 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
  • 17. 18 Our Panelists
  • 18. Oregon Rural Practice-based Research Network 19
  • 19. Dartmouth-Hitchcock Medical Center 20
  • 20. PHMC Nursing Network 21
  • 21. How patients experience engagement when incentives are misaligned Dominick L. Frosch, PhD May 23, 2013
  • 22. 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
  • 23. 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
  • 24. 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
  • 25. 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
  • 26. I think I prefer this option…
  • 27. 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.
  • 28. 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
  • 29. 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)
  • 30. 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)
  • 31. 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)
  • 32. 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
  • 33. 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
  • 34. 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
  • 35. 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.