1. RETHINKING HEALTH LITERACY RETHINKING HEALTH LITERACY a meaning, measures & outcomes Michael Wolf, MA MPH PhD Professor, Medicine & Learning Sciences Feinberg School of Medicine Northwestern University Chicago, IL USA

2. Disclosures FederalFoundationIndustry  NIH - NHLBI - NIA - NICHD - NINR - OBSSR  AHRQ  American Cancer Society  California Endowment  California Healthcare Foundation  Missouri Foundation for Health  Atlantic Health  Abbvie/Abbott  Eli Lilly  Emmi Solutions  Land of Lincoln Health  Luto  Merck  OptumHealth  UnitedHealthcare

3. Overview 1. Health Literacy:  Meaning  Measure - as covariate - as outcome 2. What’s Next

4. Overview 1. Health Literacy:  Meaning  Measure - as covariate - as outcome 2. What’s Next

5. Overview 1. Health Literacy:  Meaning  Measure - as covariate - as outcome 2. Health Literacy Research

6. Health Literacy. patient engagement shared decision making PATIENT ACTIVATION medical cognition patient-centered care health communication health behavior Human Factors care coordination Health Education self-management H EALTH P ROMOTION adherence COMPLIANCE therapeutic misadventures knowledge Experience navigation healthcare access awareness healthcare competencies Numeracy HEALTH LEARNING CAPACITY equity Cognitive Function motivation PERSONALITY Language access Unintentional non-adherence comprehension health information behavioral failure

7. Human Factors Health Promotion Health Communication Reading Problem

8. Health Literacy is… “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” - Institute of Medicine, USA “The cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health.” - World Health Organization

9. > Reading… > Numeracy 857 Adults from academic and community primary care practices, ages 55-74 REALMAM-NARTTOFHLA-RREADINGLipkusNVSTOFHLA-NNUMERACY REALMN/A AM-NART0.73*N/A TOFHLA-R0.75*0.72*N/A READING0.93*0.89*0.90*N/A Lipkus0.49*0.63*0.51*0.58*N/A NVS0.48*0.69*0.59*0.64*0.61*N/A TOFHLA-N0.39*0.48*0.46* 0.53*0.49*N/A NUMERACY0.54*0.73*0.62*0.68*0.90*0.84*0.73*N/A

10. 857 Adults from academic and community primary care practices, ages 55-74 Model I Reading Model II Numeracy Model III Reading + Numeracy Reading Factor Score10.4 (9.0,11.8)***--7.1 (5.7,8.6)*** Numeracy Factor Score--11.3 (9.7,12.8)***7.3 (5.7,8.9)*** R 2 =0.64 R 2 = 0.72 Reading, Numeracy, and their Combined Impact on Health Task Performance > Reading… > Numeracy

11. Skill Set. Reading, and … Numeracy, and... Attention Memory Speed Problem-solving (reasoning) Communication skills Many others Reading, and … Numeracy, and... Attention Memory Speed Problem-solving (reasoning) Communication skills Many others

12. Age, HL, and Cognition HL to HL : 0.46 to 0.75 FA to HL : 0.37 to 0.71 CA to HL : 0.71 to 0.74 Age to FA: + Age to CA: - Age to TOFHLA: + Age to REALM: -

13. Health Literacy ≠ Activation

14. Why We Care: A $200 Billion Problem The business case for health literacy  Inadequate/inaccurate knowledge of disease, treatment  Poorer self-care skills (medication use, monitoring, device use)  Inappropriate health services use Translates to:  Non-adherence  Costly urgent services (Unscheduled visits, ED, Hospitalizations)  Medication Errors & Adverse Events  Poorer outcomes (HTN, Diabetes, CHF, Asthma/COPD) HL

15. Why We Care: Pertinent Epidemiology  1 in 5 adults severely lack cognitive and psychosocial skills to manage personal health  Greatest risk among those that are: > 60 years old, < high school educated, racial/ethnic minorities, multi-morbidity  Prior studies suggest MDs, RNs, and PharmDs cannot easily identify at-risk patients  Kripalani et al – low HL patients ask fewer questions; Weiss et al – don’t self-identify problems

16. A Need for Clarity  includes a skill set ~ 600 original studies comprise evidence (crude measures of reading, numeracy, health knowledge)  But we want more from individuals… - motivation, cultural factors (language, beliefs, experience)  …And the health system - accessibility, navigability, communication, follow-up  …And community - education, human services, policy, etc. HL

17. A Need for Clarity  includes a skill set ~ 600 original studies comprise evidence (crude measures of reading, numeracy, health knowledge)  But we want more from individuals… - motivation, cultural factors (language, beliefs, experience)  …And the health system - accessibility, navigability, communication, follow-up  …And community - education, human services, policy, etc. HL

18. A Need for Clarity  includes a skill set ~ 600 original studies comprise evidence (crude measures of reading, numeracy, health knowledge)  But we want more from individuals… - motivation, cultural factors (language, beliefs, experience)  …And the health system - accessibility, navigability, communication, follow-up  …And community - education, human services, policy, etc. HL

19. A Need for Clarity  includes a skill set ~ 600 original studies comprise evidence (crude measures of reading, numeracy, health knowledge)  But we want more from individuals… - motivation, cultural factors (language, beliefs, experience)  …And the health system - accessibility, navigability, communication, follow-up  …And community - education, human services, policy, etc. HL

20. 2 Primary Objectives ► An Outcome: Clear Health Communication 1.Promote for all healthcare consumers ► A Risk Factor: Health & Healthcare Equity 2.Reduce literacy disparities in health HL

21. Measures

22. Existing Tools  Individual traits  Research vs. clinical  Variable thresholds reported  Limited modality  Resilience over time  Aging  SES

23. “How often do you need to have someone help you when you read instructions, pamphlets, or other written material from your doctor or pharmacy?”

25. Performance preserved: - Verbal Ability - REALM

26. Performance declines: - Long-term memory - Working memory - Inductive Reasoning - Processing Speed - TOFHLA - NVS Performance preserved: - Verbal Ability - REALM

27. Unpack from SES? NAAL, 2003

28. Outcomes

29. Outcomesisk Factor Background Knowledge (retrieve, recall) ‘Functional Understanding’ of Behaviors (apply) Self-Efficacy (information-seeking)  Activation  Communication  Behavior change/maintenance  Health Services Use  Outcomes HL

30. Outcomesisk Factor Background Knowledge (retrieve, recall) ‘Functional Understanding’ of Behaviors (apply) Self-Efficacy (information-seeking)  Activation  Communication  Behavior change/maintenance  Health Services Use  Outcomes HL DIRECT

31. Demonstration vs. Subjective Assessment

32. ‘Take two pills by mouth twice daily’: Seemingly Simple, Often Unclear

33. Outcomesisk Factor Background Knowledge (retrieve, recall) ‘Functional Understanding’ of Behaviors (apply) Self-Efficacy (information-seeking)  Activation  Communication  Behavior change/maintenance  Health Services Use  Outcomes HL DISTAL

35. Health Literacy Research

36. Measure to Respond to Disparities Anne Beal, MD - PCORI Goal 1

37. Can we Close the Gap?

38. Can we Confuse People Less? Alastair J.J. Wood, MD Goal 2

39. Evaluate Health Systems Ruth Parker, MD Goal 3

40. Recommendations  Include measures in research - preferences?  Report Standard Thresholds - gradient or threshold effect?  Have reasonable, objective outcomes - what to power to?  Test for interactions (Goal 1) HL

41.  Recognize performance is dependent on the system, not just individual - can you include system attributes?  Mediating, Moderating Factors  Consider Activation Recommendations (cont.)

42. Michael Wolf, MA MPH PhD Professor, Medicine & Learning Sciences Associate Division Chief – Research General Internal Medicine & Geriatrics mswolf@northwestern.edu