Health Literacy and Research Day at Harding University

1. Health Literacy and ResearchResearch Day at Harding UniversitySearcy, ArkansasMarch 28, 2019 Jennifer Dillaha, MD Medical Director for Immunizations Medical Advisor for Health Literacy Arkansas Department of Health

2. Why is Health Literacy Important? • Institute of Medicine’s To Err is Human: Building a Safer Health System (2000) • IOM’s Crossing the Quality Chasm: A new Health System for the 21st Century (2001) • Recommended systematic identification of priority areas for quality improvement • Committee charged with generating a list of 15-20 candidate areas http://www.ahrq.gov/qual/iompriorities.htm

3. Priority Areas for National Action • Quality considered to be a systems property • Did not focus on improving treatments through biomedical research or technological innovation • Focused on ways to improve the delivery of treatments • Identified priority areas that presented the greatest opportunity http://www.ahrq.gov/qual/iompriorities.htm

4. Priority Areas for National Action • Beyond a disease-based approach • Five domains in recommended framework • Staying Healthy • Getting Better • Living with Illness/Disability • Coping with End of Life • Cross-cutting Systems Interventions http://www.ahrq.gov/qual/iompriorities.htm

5. Institute of Medicine Priorities Areas for National Action: Transforming Health Care Quality Self-management/ Health Literacy Care Coordination

6. Health literacy is a stronger predictor of health status than age, income, employment status, education level, or racial and ethnic group. "Health Literacy: Report of the Council on Scientific Affairs." JAMA 1999:281:552-557.

7. What is Health Literacy? The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. (Ratzan & Parker, 2000) Health Literacy: A Prescription to End Confusion. Institute of Medicine. 2004

8. Dillaha Definition • Health Literacy is your ability to get and use information to make decisions to manage your own health or the health of someone for whom you are responsible, such as your children, your parents, your employees, or your community. • It is a functional skill set in the same way that computer literacy or financial literacy are skill sets.

9. Scope of Health Literacy • Health-related activities are a part of the daily life of adults, whether sick or well. • Many health-related decisions are made in the workplace and in the marketplace. • The presentation of health information is often unnecessarily complex. • Current evidence reveals a mismatch between people’s skills and the demands of health systems.

10. A Hidden Problem • Low health literacy is often undetected • People may have trouble understanding both printed materials and the meaning of discussions with providers • People who are confused about health information may feel ashamed • They may mask their shame to maintain their dignity

11. 2003 National Assessmentof Adult Literacy • Most recent assessment of English Literacy • N = 19,000 adults (>16 years) • 500 everyday literacy tasks • First large scale national assessment of Health Literacy • Four Literacy Levels http://nces.ed.gov/naal/health.asp

12. Health Literacy Levels • Below Basic (14%) —circle date on appointment slip • Basic (22%)—read pamphlet and determine symptoms of a disease • Intermediate (53%)—vaccine schedule • Proficient (12%)—calculate share of health insurance cost from table

13. So Who’s at Risk for Low Health Literacy? • Men > Women • Black and Native Americans > White and Asian • Hispanics had lowest skills among minorities • Persons 65 years and older had lowest

14. Health Literacy Skills of U.S. Adults by Age Group, 2003

15. Inadequate health literacy increases with age… % Gazmararian, et al. JAMA 1999

16. What Can We Do About It? • Implement evidence-based interventions for systems change • Implement evidence-based interventions for older adults • Undertake research to expand the evidence base

17. Public Health

18. State Health Assessment • State Health Improvement Plan • Areas of Focus: • Life Expectancy • Infant Mortality • Health Literacy • http://www.healthy.arkansas.gov

19. Public Health Literacy • Darcy Freedman, PhD • Takes into account the complex social, ecologic, and systemic forces affecting health and well-being. • Public health literacy is distinct from individual-level health literacy • Together, the two types of literacy form a more comprehensive model of health literacy. A five-part agenda is offered for future research and action aimed at increasing levels of public health literacy. • https://www.sciencedirect.com/science/article/pii/S0749379709000920

20. Community Health

21. State Legislators’ Attitudes and Voting Intentions • Toward Tobacco Control Legislation • https://ajph.aphapublications.org/doi/pdf/10.2105/AJPH.87.7.1197 • Questionnaire examined factors influencing legislators' voting decisions about tobacco, including knowledge, attitudes, and personal behaviors. • Some respondents are unaware of or did not believe the scientific evidence regarding the harmful effect of second hand smoke.

23. Role of Libraries • Help patients needing Internet access • Introduce patients with printed health materials and Internet resources • Introduce them to the role of a librarian • Let them know what services the library has to offer

24. Arkansas Adult Learning Alliance • www.arkansasliteracy.org • Statewide non-profit that provides structure and support to county-level literacy councils • Serves adults in over 50 Arkansas counties

25. Health Care

26. Health Systems • Demands for reading, writing, and numeracy skills are intensified due to systems’ complexities and new technologies • These demands exceed the health literacy skills of most adults in the U.S. • Health literacy is fundamental to access and quality of care

27. Calgary Charter on Health Literacy • Heath literacy allows the public and personnel working in all health-related contexts to find, understand, evaluate, communicate, and use information. • Health literacy applies to all individuals and to health systems. http://www.centreforliteracy.qc.ca/sites/default/files/CFL_Calgary_Charter_2011.pdf

28. Ten Attributes of Health Literate Health Care Organizations • Has leadership that makes health literacy integral to its mission, structure, and operations. • Integrates health literacy into planning, evaluation measures, patient safety, and quality improvement. • Prepares the workforce to be health literate and monitors progress. • Includes populations served in the design, implementation, and evaluation of health information and services. • Meets the needs of populations with a range of health literacy skills while avoiding stigmatization. Brach C, Keller D, Hernandez LM, Baur C, Parker R, Dreyer B, Schyve P, Lemerise AJ, and Schillinger D. Institute of Medicine Discussion Paper, June 2012.

29. Ten Attributes of Health Literate Health Care Organizations • Uses health literacy strategies in interpersonal communications and confirms understanding at all points of contact. • Provides easy access to health information and services and navigation assistance. • Designs and distributes print, audiovisual, and social media content that is easy to understand and act on. • Addresses health literacy in high-risk situations, including care transitions and communications about medicines. • Communicates clearly what health plans cover and what individuals will have to pay for services.

30. Considerations for a New Definition of Health Literacy • Include system demands and complexities as well as individual skills and abilities • Include measurable components, processes, and outcomes • Recognize potential for an analysis of change • Demonstrate linkage between informed decisions and action • https://nam.edu/considerations-for-a-new-definition-of-health-literacy/

31. AHRQ Universal Precautions Health Literacy Toolkit • www.ahrq.gov/qual/literacy/ • Assume that everyone may have difficulty understanding • Ensure that systems are in place to promote better understanding by all patients • Divided into manageable chunks • Quick Start Guide • Path to Improvement (6 steps to take to implement the toolkit) • 20 Tools (2-5 pages each) • Appendices (over 25 resources such as sample forms, PowerPoint presentations, and worksheets)

32. Single-Question Screen • Identifies persons at higher risk for inadequate health literacy • "How confident are you filling out medical forms by yourself?“ • Being piloted at UAMS in their EMRs • Allows data to be pooled and compared • Asked once for new patients

33. Promote Use of Plain Language • Assess readability of materials, especially on the Internet and EHRs • Implement training in plain language • Most health communication materials are written at 10th to 12th grade level or higher • Most web-based materials are at 10th to 17th grade level or higher

34. Common Barriers in Electronic Health Records • Specialized vocabulary, abbreviations and symbols • Complex sentence structure • Poor navigation design: Mismatch between search strategies and portal terms • High numeracy demands, especially lab/test results • Patient education materials are not controlled for literacy or health literacy levels

35. Confirm Understanding • Demonstrates your compassion • Identifies and clarifies misunderstandings in real time • Assist your patient’s ability to recall instructions later • Empowers your patient to take action

36. Teach-Back • You ask your patients or your family members to explain in their own words what they need to know or do • A simple method to confirm understanding • Online training: • AHRQ:https://www.ahrq.gov/professionals/quality-patient-safety/patient-family-engagement/pfeprimarycare/interventions/teach-back.html • Always Use Teach-back!: http://www.teachbacktraining.org/

37. Plain Language Resources • UnitedHealth Group Just Plain Clear Glossary • justplainclear.com • CDC Everyday Words for Public Health Communication • https://www.cdc.gov/other/pdf/everydaywords-060216-final.pdf

38. Health Literacy Training • Online Health Literacy Training Programs • https://libguides.health.unm.edu/c.php?g=238059&p=1582649 • Centers for Disease Control and Prevention • https://www.cdc.gov/healthliteracy/index.html • Agency for Healthcare Research and Quality • https://www.ahrq.gov/topics/health-literacy.html

39. Online Resources for Patients • MedlinePlus • https://medlineplus.gov/ • English and Spanish • Health Topics • Drugs & Supplements • Video & Tools • Lab Test Information • Medical Encyclopedia

40. What To Do For Senior Health • Institute for Healthcare Advancement • https://www.iha4health.org/ • Easy-to-Read Health Books • 3rd to 5th Grade Level • No Medical Jargon • Lots of Useful Illustrations

41. Health Literacy Research Design • Straightforward Health Literacy Research • Health Literacy as an unrecognized confounder

42. Health literacy is a stronger predictor of health status than age, income, employment status, education level, or racial and ethnic group. "Health Literacy: Report of the Council on Scientific Affairs." JAMA 1999:281:552-557.

43. Understanding HIV Disparities • 204 patients infected with HIV were recruited from two clinics • Interviews were conducted to obtain info on patient demographics, medication adherence, and health literacy • Analysis was conducted to examine associations among race, literacy, and HIV-medication adherence Osborn CY, Paasche-Orlow MK, Davis TC, Wolf MS. Health Literacy: An Overlooked Factor in Understanding HIV Health Disparities. Am J Prev Med 2007; 33:374-378.

44. Understanding HIV Disparities • Blacks were 2.4 times more likely to be non-adherent to their HIV-medication regimen than whites with health literacy excluded. • With health literacy included in the final model, the effect estimates of race diminished to non-significance. • Health literacy remained a significant independent predictor of non-adherence. Osborn CY, Paasche-Orlow MK, Davis TC, Wolf MS. Health Literacy: An Overlooked Factor in Understanding HIV Health Disparities. Am J Prev Med 2007; 33:374-378.

45. Health Literacy Conferences • Institute for Healthcare Advancement • May 1-3, 2019, Orange County, CA • https://www.iha4health.org/ • Wisconsin Health Literacy Summit • April 2-3, 2019, Madison, WI • http://wisconsinliteracy.org/health-literacy/index.html • Health Literacy Annual Research Conference • HARC XI, October 27-30, 2019, Bethesda, MD • http://www.bumc.bu.edu/healthliteracyconference/

46. National Academy of MedicineRoundtable on Health Literacy • Meetings • A Workshop on Health Literacy in Clinical Trials: Practice and Impact, April 11, 2019 • May be attended online • Videos of previous meeting available • Publications • Proceedings from workshops • Perspectives & Commissioned Papers • Collaboratives

47. Centers for Disease Control and Prevention • https://www.cdc.gov/healthliteracy/index.html • Online Training • Guidelines, Laws, & Standards • Research • Federally Funded Research • Sharing Health Literacy Research • Evidence & Research

48. Agency for Healthcare Research and Quality • AHRQ invests in research and evidence to make health care safer and improve quality. • Generates measures and data used to track and improve performance and evaluate progress. • Develops evidence-based tools and resources used to improve quality, safety, effectiveness, and efficiency of health care. • https://www.ahrq.gov/topics/health-literacy.html • Tools for Researchers

49. Health Literacy Tool Shed • Issue: finding the right health literacy measurement tool for your research • Online database of health literacy measures • Information about measures, including their psychometric properties, based on review of the peer-reviewed literature. • Currently 159 measures • https://healthliteracy.bu.edu/

50. Health Literacy Leadership • June 10-14, 2019 • Tufts University's Health Sciences Campus in downtown Boston • One-week Institute • Supports the work of professionals engaged in health literacy work to transform public health and healthcare delivery across the globe • Core components: Peer learning and sharing of research and best practice