1. What to do about Health Literacy Testing? Clinical practice and research perspectives Paul D. Smith, MD Andrea Morrison, MD UW Department of Family Medicine Medical College of Wisconsin Paul.Smith@fammed.wisc.edu akmorris@mcw.edu

2. Disclosure Statement Dr. Smith has this conflict of interest: Consultant for Wisconsin Literacy Inc. Dr. Morrison has no conflicts of interest

3. Goals for Today High level overview of: Literacy and health literacy definitions Health literacy measurement Health Literacy measures Lots of time for questions and discussion

4. Topics Literacy and health literacy definition(s) Why measure? Who to measure? How to measure? Resources

5. Show of Hands Involved with: Healthcare? Literacy? Research? Health insurance? Other fields?

7. Literacy skills

8. What is Literacy? National Assessment of Adult Literacy (NAAL 2003) “Using printed and written information to function in society, to achieve one's goals, and to develop one's knowledge and potential.”

9. What is Literacy? Literacy is a combination of skills: VerbalListening Numeracy Critical analysis WritingReading

10. More than just reading grade level Prose Literacy Written text like instructions or newspaper article Document literacy Short forms or graphically displayed information found in everyday life Quantitative Literacy Arithmetic using numbers imbedded in print

11. What is Health Literacy? The Institute of Medicine 2004 “The degree to which individuals have the capacity to obtain, process, and understand basic information and services needed to make appropriate decisions regarding their health.”

12. What is Health Literacy? The Institute of Medicine 2004 “The degree to which individuals have the capacity to obtain, process, and understand basic information and services needed to make appropriate decisions regarding their health.”

13. What is Health Literacy? The Institute of Medicine 2004 “The degree to which individuals have the capacity to obtain, process, and understand basic information and services needed to make appropriate decisions regarding their health.”

14. But There’s More Interaction Ability to communicate on health matters Evaluation Ability to filter, interpret, and evaluate Responsibility Ability to take responsibility for one’s health and healthcare decision-making

15. And More Confidence Level of confidence to take action to improve personal and community health Navigation Ability to navigate in society and health systems Social support Resources one has to assist health decision- making and health management

16. And Even More Rights and access Access one has to information and services Trust Trust in health system, information, and providers Motivation Motivation to take action Mental state Sleep deprived, anxiety, depression, pain

17. Literacy VS Health Literacy Almost everyone will have difficulty with health literacy at some point. Much harder for those that do not: Read very well. Speak English as their primary language.

18. Who Should We Measure? Populations Service group Community State/province/nation Healthcare organizations Individual healthcare workers Individual patients in healthcare setting Individual people in a research setting

19. Why Should We Measure? Assess current state of health literacy Identify strengths and weaknesses Assess if interventions work Influence policy Demographic factor for research Influence individual patient’s care

20. Strengths and Weaknesses Play to strengths Implement intervention to improve weakness Reassess after intervention Develop new interventions based on need

21. Influence Policy Powerful method accomplish change Combine facts/needs with emotional issues Many levels of policy Health care organizations Health insurance companies Local, state and national government

22. Individuals During Clinical Care? 12% of adults “proficient” in health literacy Many individual HL attributes change or are context/background specific Emotional factors Knowledge factors Universal precautions Identify those with most need?

23. Research Demographic Factor Years of education ≠ literacy level Almost 20% of high school grads are functionally illiterate Have to define your sample Not just for literacy/HL research Especially behavior change interventions

24. How Should We Measure? Individual patients in healthcare setting For research Healthcare organizations Individual healthcare workers Communities

25. Individual Patients 3 question screen How often do you have problems learning about your medical condition because of difficulty understanding written information? How confident are you filling out medical forms by yourself? How often do you have someone help you read hospital materials? Chew, et al, Brief Questions to Identify Patients With Inadequate Health Literacy. Fam Med 2004;36(8):588-94.

26. Individual Patients 1 question screen How confident are you filling out medical forms by yourself? Wallace, et al, BRIEF REPORT: Screening Items to Identify Patients with Limited Health Literacy Skills. J Gen Intern Med. 2006 Aug; 21(8): 874–877. doi: 10.1111/j.1525-1497.2006.00532.x

27. Individual Patients Newest Vital Sign Nutrition label 6 questions 3 minutes http://www.pfizer.com/health/literacy/public_policy_researchers/nvs_toolkit

28. What Should We Discuss Next? For research Healthcare organizations Individual healthcare workers Communities

29. Measure Considerations for Research

30. Health Literacy Measurement Dimensions  Literacy- ability to perform basic reading tasks  Interaction and comprehension (print and aural)  Numeracy- ability to perform basic numerical tasks  Information seeking- ability to find health related information  Application/function- the ability to use, process or act on health related information  Decision making- the ability to make sound, health related decisions and informed choices  Navigation- level of skill to navigate in society and health systems to manage one’s health needs  Evaluation- the ability to filter, interpret, and evaluate information  Responsibility- the ability to take responsibility for one’s health and health care decisions  Self-efficacy- confidence to take action to improve personal health Sorensen et al., 2012; Haun 2014

31. Measure Administration Considerations Item content Objective or self-report Administered or self-administered Administration length Training required Fee Health literacy dimensions

32. Review of Measures  51 unique tools; 11 short forms  26 general; 15 disease/content specific; 10 population  Most tools:  Performance based  Require in person administration  Exclusively pencil and paper  Assess 0-9/11 dimensions of health literacy  Time <1 min-60 minutes  Lack key psychometric properties (construct, convergent, and predictive validity) Haun JN, et al. (2014) Health Literacy Measurement: An Inventory and Descriptive Summary of 51 Instruments. Journal of Health Communication: International Perspectives, 19:sup2, 302-333.

33. Research- General Measures  Established measures  Test of Functional Health Literacy in Adults (TOFHLA and S- TOFHLA)  Rapid Estimate of Adult Literacy in Medicine (REALM, etc)  Newest Vital Sign (NVS)  Newly developed measures:  Health Literacy Questionnaire (HLQ)  Flight / Vidas

34. Test of Functional Health Literacy in Adults http://www.peppercornbooks.com/catalog/information.php?info_id=5 TOFHLA Item contentCloze-style reading comprehension of health related content Objective or self-reportObjective Administered or self-administeredAdministered Administration length18-22 minutes / 7 for S-TOFHLA Training RequiredMinimal Fee$70 Registration fee Health literacy dimensionsLiteracy, Comprehension, Numeracy, Evaluation

35. TOFHLA “Here are some other medical instructions that you or anybody might see around the hospital. These instructions are in sentences that have some of the words missing. Where a word is missing, a blank line is drawn, and 4 possible words that could go in the blank appear just below it. I want you to figure out which of those 4 words should go in the blank, which word makes the sentence make sense…”

36. Rapid Estimate of Adult Literacy in Medicine http://www.ahrq.gov/professionals/quality-patient-safety/pharmhealthlit/realm-r.html REALM Item contentHealth word recognition and pronunciation Objective or self-reportObjective Administered or self-administeredAdministered Administration length2-3 minutes Training RequiredMinimal FeeFree to use and available online Health literacy dimensionsLiteracy

37. REALM-R  “Please say these words for me.”  Each word is scored if pronounced correct or incorrect

38. Newest Vital Sign NVS Item contentSurvey items about information on a nutrition label Objective or self-reportObjective Administered or self-administeredAdministered Administration length2-6 minutes Training RequiredMinimal FeeFree to use and available online Health literacy dimensionsLiteracy, Comprehension, Numeracy, Application, Evaluation http://www.pfizer.com/health/literacy/public_policy_researchers/nvs_toolkit

39. NVS  6 questions regarding an ice cream label “This information is on the back of a container of a pint of ice cream.”  If you eat the entire container, how many calories will you eat?  If you usually eat 2500 calories in a day, what percentage of your daily value of calories will you be eating if you eat one serving?

40. Health Literacy Questionnaire HLQ Item contentSurvey items measuring health literacy of individuals Objective or self-reportSelf-report Administered or self-administeredSelf-administered Administration length5-10 minutes (Up to 30 minutes over phone) Training RequiredMinimal Fee$250 registration fee Health literacy dimensionsInteraction, Comprehension, Information seeking, Application, Decision making, Navigation http://www.deakin.edu.au/health/research/phi/health-litracy-questionnaire.php

41. HLQ- Example questions http://www.bumc.bu.edu/healthliteracyconference/files/2014/06/Beauchamp-Presentation- final_HARC-2014.pdf

42. Fostering Literacy for Good Health Today (FLIGHT)/ Vive Desarollando Amplia Salud (VIDAS) http://www.flightvidas.org FLIGHT/ VIDAS Item contentSurvey items measuring health literacy of individuals Objective or self-reportObjective Administered or self-administeredSelf-administered (Computer) Administration length10-15 minutes Training RequiredMinimal FeeUnknown Health literacy dimensionsLiteracy, Interaction, Comprehension, Numeracy, Information seeking, Application, Decision making, Navigation

43. Flight/Vidas Item Content Ownby, et al, 2013

44. Flight/Vidas Item example

45. The Future of Health Literacy Measures  Measure validation is needed  More measures needed that measure all dimensions  National Library Medicine is creating a Health Literacy Measure Inventory  Health Literacy PROMIS-type item bank?

46. Organizations American Medical Association Communication Climate Assessment Toolkit (C-CAT) Well validated Assess leadership, staff and patients Comparative data available Multiple languages http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/the-ethical-force- program/patient-centered-communication/organizational-assessment-resources.page

47. Agency for Healthcare Research and Quality (AHRQ) Health Literacy Universal Precautions Toolkit http://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/ http://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/ Pharmacy Health Literacy Assessment Tool & User's Guide. pharmacy and staff http://www.ahrq.gov/professionals/quality-patient-safety/pharmhealthlit/tools.html#tool http://www.ahrq.gov/professionals/quality-patient-safety/pharmhealthlit/tools.html#tool

48. Agency for Healthcare Research and Quality (AHRQ) Consumer Assessment of Healthcare Providers and Systems Questions (CAHPS) Health literacy supplement www.cahps.ahrq.govwww.cahps.ahrq.gov 31 items with rigorous development and validation

49. Organizations Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals Joint Commission Check list- not a measurement tool http://www.jointcommission.org/Advancing_Effective_Communication/ Health Plan Organizational Assessment of Health Literacy Activities Insurer assessment, 2010, no validation work https://www.ahip.org/Issues/Documents/2010/Health-Plan- Organizational-Assessment-of-Health-Literacy-Activities.aspx

50. Organizations Literacy Audit for Healthcare Settings. 5 attributes, 57 items, no validation, Ireland, 2009 Search for title Enliven Organisational Health Literacy Self- Assessment Resource 10 attributes, 8/2013, 85 questions, limited development documentation or validation http://www.enliven.org.au/Documents/Library/Resources/Health%20lit%20reso urces/Enliven%20Health%20Literacy%20Audit%20Resource.pdf http://www.enliven.org.au/Documents/Library/Resources/Health%20lit%20reso urces/Enliven%20Health%20Literacy%20Audit%20Resource.pdf

51. Healthcare Workers Communication Climate Assessment Toolkit Consumer Assessment of Healthcare Providers and Systems Questions (CAHPS) Pharmacy Health Literacy Assessment Tool & User's Guide

52. Measuring Health Literacy in a Community or Population

53. Population/Community Health Literacy  Interventions in the community have great potential  Most health literacy assessment focuses on individual skills, not community skills  Population health literacy has generally been measured on individuals and a single score reported Guzys et al. BMC Public Health, 2015

54. DAHL  Demographic Assessment for Health Literacy (DAHL)  Impute limited health literacy in a population  Avoid in-person evaluation  Uses sociodemographic information to impute health literacy  Gender, age, race/ethnicity, years of school  May be more applicable to studying populations in databases Hanchate, et al. 2008. J Gen Intern Med.

55. Ophelia Approach  Optimizing Health Literacy and Access to Health Information and Services  System that supports the:  Identification of health literacy needs and capabilities of the community  Development of solutions  Testing of solutions  Community Based Participatory Research informed by health literacy measurement http://www.ophelia.net.au/bundles/opheliapublic/pdf/Info-Sheet-7-The-Ophelia-Approach.pdf

56. Using the HLQ in a community-Ophelia  Phase 1: Identify health literacy strengths and limitations  HLQ and demographics  Feedback to clinicians/managers  Phase 2: Co-create health literacy interventions  Local stakeholders work together to respond to health literacy limitations  Phase 3: Implementation and evaluation  Health literacy interventions applied using quality improvement methodology Beauchamp et al, www.ophelia.net.au

57. Using the HLQ in a Community-Ophelia  Phase 1: Administered HLQ to 813 individuals, performed cluster analysis http://www.bumc.bu.edu/healthliteracyconference/files/2014/06/Beauchamp-Presentation- final_HARC-2014.pdf

58. Benefits  Specifically targeting the local health literacy needs may have more impact  Using the HLQ to provide broad conclusions about health literacy skills of community  Implementation likely to be successful because of community involvement

59. Resources Haun et al Health literacy measurement: An inventory and descriptive summary of 51 instruments. J Health Commun: International Perspectives 2014, 19(2):302- 333 (http://dx.doi.org/10.1080/10810730.2014.936571WHO HL toolkit Jordan et al. Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. J Clin Epidemiol. 2011 Apr;64(4):366-79. doi: 10.1016/j.jclinepi.2010.04.005 National Library of Medicine (will likely publish the inventory of measures here) http://nnlm.gov/outreach/consumer/hlthlit.html

60. Resources Dodson et al. Health literacy toolkit for low and middle-income countries: a series of information sheets to empower communities and strengthen health systems. New Delhi: World Health Organization, Regional Office for South-East Asia, 2015. http://www.searo.who.int/entity/healthpromotion/documents/hl_tookit/en/ http://www.searo.who.int/entity/healthpromotion/documents/hl_tookit/en/ Agency for Healthcare Research & Quality www.ahrq.gov/health-care-information/topics/topic-health-literacy.html America’s Health Insurance Plans (AHIP) https://www.ahip.org/HealthLiteracy/

61. Questions? Comments

62. “Action expresses priorities.” “Be the change that you want to see in the world.” ---Mohandas Gandhi