1. Health Literacy and Consumer Roles in Health Care Quality Judith Hibbard University of Oregon Presented at the Wisconsin Health Policy Forum June 16, 2004

2. Current health policy aims to strengthen the role of consumers in health care. There is a growing recognition that our ability to control costs and improve quality will require an effective partnership with informed and engaged consumers.

3. Roles for Patients and Consumers Informed choice Role Using performance information to choose providers Selecting cost-effective evidenced based treatments Co-producer Self-care Preventive actions Collaborating with providers Vigilant partner in assuring health care safety Evaluator Source of data on provider performance Help to define the parameters of quality care

4. Virtuous Cycle When consumers take on these three roles they likely: Get better care for themselves and Contribute to mechanisms that improve the quality of care for everyone

5. Informed and activated patients represent a tremendous untapped resource within the health care arena It is a resource we can no longer afford to leave untapped With an aging population and the increased rates of chronic illness there is an urgent need to support patients in these three roles.

6. Making choices in health care is complex-- requiring higher levels of health literacy Ultimately we want information to be used to inform choices. Comprehend information Be motivated to use it Be able to information into choices.

7. Low literacy Medicare beneficiaries would rather delegate decisions Literacy:

8. Low literacy Medicare beneficiaries find decisions worrisome.

9. Using comparative performance reports are: Difficult to understand Too much information to process Difficult to bring together into a choice

10. Stroke – Non-Hemorrhagic Short Length of Stay Long Length of StayReadmissions HospitalCases Mortality Rating Length of Stay%Rating% % for Any Reason % for Complication or Infection Average Charge Methodist Division/TJUH97  6.32.2  13.3 17.26.2$28,516 Astoria Hosp146  4.66.5  3.6  17.35.2$14,420 Barrett292  6.21.45.0  16.55.0$25,127 North Bend112  5.33.8  2.9  10.24.1$16,386 Palmerton70  6.61.6  7.9  16.58.2 $9,569 Parkview60  6.05.4   28.48.3$25,048 Northrup83  5.78.9  7.6  10.84.6$29,486 Phoenixville75  4.74.4  1.5  10.94.6$16,771 Memorial135  4.64.7  2.3  10.31.5$16,782 Warrem100  7.64.7  18.6 15.18.6$10,115 Significantly higher than expected,  Not significantly different than expected, Significantly lower than expected

11. Getting needed care Percent of members who said they had no problem obtaining a personal doctor they like, a referral to see a specialist, necessary care, or timely approvals of care:

12. Medical Group G Medical Group D Medical Group C Medical Group E Medical Group J Medical Group H Medical Group I Medical Group B Medical Group F Medical Group A 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Overall Quality of Care and Services Percentage of patients reporting very good or excellent Worse Better

15. Literacy: Literacy and ability to interpret the Information

16. What do people do when faced with this degree of complexity? Reduces their motivation Increases the odds they will stay with status quo if that is an option Take short cuts– may leave out important factors

17. What can we do to help consumers make better decisions? Make information more evaluable Summarize Interpret Do much of the cognitive work for the viewer

18. Regional HospitalsSurgeryNon-SurgeryHip/KneeCardiacMaternity Hospital A Hospital B Hospital C Hospital D * Community HospitalsSurgeryNon-SurgeryHip/KneeCardiacMaternity Hospital F Hospital G Hospital H Hospital I Hospital J Hospital K Hospital L Hospital M * Hospital N Hospital O Hospital P * Hospital Q * What the symbols mean: Fewer mistakes, complications and deaths than expected Average number of mistakes, complications and deaths More mistakes, complications and deaths than expected

19. With An Evaluable Performance Report Consumers more likely to note differences Remember high and low performers Talk to others Make recommendations based on report ….contributing to the virtuous cycle

20. Treatment choices: What else supports good decision-making? Highlight factors that are often overlooked Framing Vividness Help people to understand what it might feel like to live with a choice Narratives

21. The information is weighted and used in choice. Framing Decision support tools Information intermediary Evaluability Narratives Vividness Highlights meaning. Easier to use. Moves person closer to actual experience. Comprehension/ interpretation Motivation Relative valuing of information

22. Roles for Patients and Consumers Informed Choice Role Using performance information to choose providers Selecting cost-effective evidenced based treatments Co-producer Self-care Preventive actions Collaborating with providers Vigilant partner in assuring health care safety Evaluator Source of data on provider performance Help to define the parameters of quality care

23. Co-Producer Role Demands of co-producer role are different than informed choice– still must use information. requires more day to day living and coping skills Patients need support and encouragement from their providers

24. When it comes to chronic disease the patient is the “Captain of the Ship” To be a “captain” or even a partner in care patients need to have the necessary : Knowledge Skills Confidence

25. Literacy: Health literacy necessary for co-producer role.

26. Literacy:

27. Assessing patients’ capability should be part of the “vital signs” taken at a visit Does the patient understand? Does he/she have the skills and confidence necessary to self-manage? Patients who are getting good care should, overtime be gaining in their ability to self-manage Capability to self-manage is an intermediate outcome of care that should be tracked.

28. If it is important then we should be measuring it! The Patient Activation Measure (PAM) Assesses the degree to which patients have the skills, knowledge and confidence to manage their condition and to interact effectively with their providers The measure is a uni-dimensional, interval level, Guttman-like scale The measure is developmental with 4 stages

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30. Tailoring care plans to individual patient’s capabilities would likely yield better results. Providers could then be more targeted in their education and support for patients When patients are told to take actions they are not capable of, they are more likely to do nothing than if they are given a goal that they can reasonably meet.

31. Measuring Patient Activation for QI Processes measures: Are the processes in place to support patient activation? Outcomes measures: Are patients becoming more activated over time?

32. Supporting the Co-producer Role Measurement is the first necessary step Identify interventions that help patients at different levels of activation is the next step We are currently at square one– have a steep learning curve ahead.

33. Roles for Patients and Consumers Informed choice Role Using performance information to choose providers Selecting cost-effective evidenced based treatments Co-producer Self-care Preventive actions Collaborating with providers Vigilant partner in assuring health care safety Evaluator Source of data on provider performance Help to define the parameters of quality care

34. Evaluator Role Bring consumers along in the wider discussion quality gaps and possibilities (what does good care look like?) Encourage patient involvement in defining elements of quality Expand to all areas of care Use patient assessments as a basis for QI

35. Providers, delivery systems, and purchasers can do much to support and reinforce these roles for consumers. Making the use of information easier Sanctioning and modeling the use of outcomes and performance data for informing health care choices Measuring patient activation and literacy as part of the vital signs taken during a visit Measuring and reporting on how well providers are supporting patients in their co-producer role Making wider use of consumers in defining and measuring quality in all areas of care.