1. SYDNEY MEDICAL SCHOOL HEALTH LITERACY AND HOW CAN WE IMPROVE IT What is the evidence ? Sian Smith PhD sian.smith@sydney.edu.au Screening and Test Evaluation Program (STEP) Centre for Medical Psychology and Evidence-based Decision Making (CeMPED)

2. SYDNEY MEDICAL SCHOOL ACKNOWLEDGMENTS Kirsten McCaffery Don Nutbeam Lyndal Trevena Alex Barratt Judy Simpson

3. WHAT IS HEALTH LITERACY?  What is health literacy?  How does it affect health?  What can we do about it?

4. WHAT IS LITERACY? 4 McCaffery, J., Merrifield, J. and Millican, J. (2007). Developing adult literacy: Approaches to planning, implementing and delivering literacy initiatives. Oxford, Oxfam publishing. Basic skills in reading and writing, ability to apply these skills to perform tasks in everyday life Social and cultural contexts shape literacy activities or practices Literacy as critical reflection enables people to have a better understanding of the social world, and their role, position and power within it.

5. DIFFERENT TYPES OF LITERACIES The term ‘literacy’ has also been applied to a range of contexts including: Political Financial Computer Family Health Media Nutbeam, D. (2009). "Defining and measuring health literacy: what can we learn from literacy studies?" International Journal of Public Health 54(5): 303-305. 5

6. WHAT IS HEALTH LITERACY? Common definitions of Health Literacy: “... a constellation of skills, including the ability to perform basic reading and numerical skills required to function in the health care environment.”(American Medical Association 1999) “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 2004) 6

7. WHAT IS HEALTH LITERACY? “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….it means more than being able to read pamphlets….By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment.” (World Health Organisation, Nutbeam 1998)

8. WHAT IS HEALTH LITERACY? 8 Processing speed Attention Working memory Reasoning Long-term memory COGNITIVE SKILLS PSYCHOSOCIAL SKILLS Analytical thinking Communication Prior knowledge and experience Self efficacy Wolf, Wilson et al (2009). Literacy and Learning in Health Care. Pediatrics 124:S275-S281.

9. WHAT IS HEALTH LITERACY? 9 3 different types of health literacy: 1.Functional literacy 2.Communicative / interactive literacy 3.Critical literacy Nutbeam, D. (2000). Health literacy as a public health goal: a challenge for contemporary health Education and communication strategies into the 21 st century. Health Promotion International 15 (3): 259-267 Freebody & Luke (1990). Literacies’ programs: debates and demands in cultural contexts. Prospect 5 7-16.

10. 10 Functional health literacy – ability to apply basic literacy and numeracy skills to access and act upon health materials Functional WHAT IS HEALTH LITERACY?

11. 11 Communicative / interactive literacy – more advanced skills to obtain relevant information, derive meaning and apply new information to changing circumstances Interactive Functional

12. WHAT IS HEALTH LITERACY? 12 Critical health literacy – most advanced, critical analysis of information to respond, adapt and control life events and situations Functional Interactive Critical

13. WHAT IS HEALTH LITERACY? The concept of health literacy has evolved from two different settings — 1.In clinical care where health literacy is seen as a “risk” factor for poor health that needs to be identified and managed in clinical care 2.In public health where health literacy is seen as an “asset” to be built – an outcome of health education and communication that supports greater empowerment in health decision making. 13 Nutbeam D (2008). The evolving concept of health literacy. Soc Sci & Med 67(12): 2072-2078

14. HEALTH LITERACY AS A RISK Health literacy assessment (health related reading fluency, knowledge) Improved clinical outcomes

15. HEALTH LITERACY AS A RISK Health literacy assessment (health related reading fluency, knowledge) Organisational practice sensitive to health literacy Improved clinical outcomes Tailored health / patient communication and education Organisational practice sensitive to health literacy Improved clinical outcomes

16. HEALTH LITERACY AS A RISK Health literacy assessment (health related reading fluency, knowledge) Organisational practice sensitive to health literacy Tailored health / patient communication and education Organisational practice sensitive to health literacy Improved access to healthcare & productive interaction with HCPs

17. HEALTH LITERACY AS A RISK Health literacy assessment (health related reading fluency, knowledge) Organisational practice sensitive to health literacy Enhanced capacity for self management, improved adherence Tailored health / patient communication and education Organisational practice sensitive to health literacy Improved access to healthcare and productive interaction with HCP Enhanced capacity for self management, improved adherence

18. HEALTH LITERACY AS A RISK Health literacy assessment (health related reading fluency, knowledge) Organisational practice sensitive to health literacy Improved access to healthcare and productive interaction with health care professionals Tailored health / patient communication and education Enhanced capacity for self management, improved adherence Improved clinical outcomes Tailored health / patient communication and education Organisational practice sensitive to health literacy Improved access to healthcare and productive interaction with health care professionals Enhanced capacity for self management, improved adherence Improved clinical outcomes Improved health outcomes

19. HEALTH LITERACY AS AN ASSET Health education: knowledge, skills to promote negotiation, active involvement and decision making

20. HEALTH LITERACY AS AN ASSET Health education: knowledge, skills to promote negotiation, active involvement and decision making Improved health literacy Developed knowledge and capacities Improved health literacy

21. HEALTH LITERACY AS AN ASSET Health education: knowledge, skills to promote negotiation, active involvement and decision making Improved health literacy Developed knowledge and capacities Engagement in social Action / advocacy for health Changed health & behaviour practice Improved health literacy Active participation in health DM

22. HEALTH LITERACY AS AN ASSET Health education: knowledge, skills to promote negotiation, active involvement and decision making Improved health literacy Improved health outcomes, health services and clinical practice Developed knowledge and capacities Engagement in social action / advocacy for health Changed health & behaviour practice Improved health literacy Active participation in health DM Improved health outcomes, health services and clinical practice Nutbeam SS&M 2008

23. UNDERSTANDING HEALTH LITERACY  Health literacy is content and context-specific – related to age and stage of disease (Nutbeam 2009) 23 A woman deciding whether to have HRT A person invited to take part in cancer screening A pregnant women receiving information about the swine flu vaccination

24. LITERACY LEVELS IN AUSTRALIA  Australian Adult Literacy and Life Skills survey 2006 (nationally rep sample adults aged 15-74 years):  46% had ‘very poor’ or ‘marginal’ literacy skills (prose and document literacy)  53% had ‘very poor’ or ‘marginal’ numeracy  60% had ‘very poor’ or ‘marginal’ health literacy  ABS 2006 concluded:  Nearly ½ of Australians do not have the ‘minimum level of literacy for coping with increasing demands of the emerging knowledge society and information economy’ ABS (2006). Adult Literacy and Life Skills Survey, Summary Results. Canberra: Australian Bureau of Statistics, Australian Government Publishing Service. Cat No. 4228.0.

25. Lower levels of health literacy were associated with: Lower educational attainment Lower parental educational attainment Unemployment or not participating in the labour force Lower mean household incomes Age (decreased over the age of 40) Poorer self-assessed health Less participation in a social group or as an unpaid volunteer Not speaking English as a first language 25 LITERACY LEVELS IN AUSTRALIA ABS (2006). Adult Literacy and Life Skills Survey, Summary Results. Canberra: Australian Bureau of Statistics, Australian Government Publishing Service. Cat No. 4228.0.

26. PRESENTATION OBJECTIVES  What is health literacy?  How does it affect health?  What can we do about it?

27. LOW LITERACY AND POOR HEALTH  Low literacy/ health literacy linked with poor health:  Higher rates of chronic illness (e.g. hypertension, heart disease, diabetes, obesity)  Higher rates of mortality (any cause)  Higher hospitalisation rates and use of emergency services  Lower rates of preventive services such as screening  Poorer self management skills  Greater medication errors  Lower levels of knowledge about disease and information seeking Dewalt DA, Berkman ND, Sheridan et al. 2004. Literacy and Health Outcomes: A Systematic Review of the Literature. Journal of General Internal Medicine 19 (12): 1228-1239

28. 28 Clinician-patient communication  Lower ratings of clinician-patient communication  Patients with low literacy often feel ashamed of their difficulties with understanding information and feel uncomfortable disclosing their literacy problems LOW LITERACY AND POOR HEALTH Schillinger et al. (2004). "Functional health literacy and the quality of physician-patient communication among diabetes patients." Patient Education and Counseling 52(3): 315-323. Wolf, et al. (2007). "Patients' Shame and Attitudes Toward Discussing the Results of Literacy Screening." Journal of Health Communication: International Perspectives 12(8): 721 - 732.

29. PATIENT INVOLVEMENT IN DECISION MAKING  Qualitative interview study to explore involvement in decision making among patients/consumers with different levels of education and literacy. Three key themes: 1.Understanding and experiences of involvement in health care decision making 2.Influence of the clinician-patient relationship 3.The perceived use and impact of health information (written and verbal) 29 Smith SK, Trevena L, Dixon A, Nutbeam D, McCaffery KJ. (2009). Exploring patient involvement in health care decision making across different education and literacy groups: A qualitative study. Social, Science and Medicine 69 (12), 1805-1812.

30. 1) Understanding and experiences of involvement Stronger desire to exert some control and “ownership” over decision making process Respected doctors expertise – responsibility to verify information Higher Education Stronger faith in medical profession Patient having responsibility for the ‘last say’ Did not describe verifying the credibility of doctor’s information Lower Education Aware that doctors are legally bound to inform patients All groups Smith SK, Trevena L, Dixon A, Nutbeam D, McCaffery KJ. (2009). Exploring patient involvement in health care decision making across different education and literacy groups: A qualitative study. Social, Science and Medicine 69 (12), 1805-1812.

31. 2) Influence of clinician-patient relationship Higher Education Valued being treated as an intelligent patient – respect for professional status Confident asking questions and challenging the doctor Valued being treated ‘as a person not just a number’ Conscious of doctors behaviour –verbal and non-verbal Avoided discordance by accepting dr’s opinion Lower Education All groups Chose doctor/ practice setting to match their preferred style Smith SK, Trevena L, Dixon A, Nutbeam D, McCaffery KJ. (2009). Exploring patient involvement in health care decision making across different education and literacy groups: A qualitative study. Social, Science and Medicine 69 (12), 1805-1812.

32. 3) Perceived function of health information Higher Education Seek information out of curiosity – helps to make a “rational” and “informed” decision Evaluate the quality of information source Search for information when diagnosed with condition or undergoing a medical procedure Did not critically evaluate information source Lower Education Supported psycho-social needs: take control feel involved confront situation All groups Smith SK, Trevena L, Dixon A, Nutbeam D, McCaffery KJ. (2009). Exploring patient involvement in health care decision making across different education and literacy groups: A qualitative study. Social, Science and Medicine 69 (12), 1805-1812.

33. PRESENTATION OBJECTIVES  What is health literacy?  How does it affect health?  What can we do about it?

34. IMPROVING HEALTH LITERACY  Research on interventions to improve health literacy is less well developed than research on the effects of low health literacy  3 systematic reviews of health literacy interventions but findings mixed (Pignone JGIM 2005, Coulter & Ellins BMJ 2007, Clement et al PEC 2009)  However, there IS evidence to guide policy and practice now  Evidence from low literacy and general population samples

35. IMPROVING HEALTH LITERACY Two key areas for evidence-based action: 1.To improve health communication 2.To support clinical decision making and patient involvement

36. IMPROVING HEALTH LITERACY There is good quality evidence to support strategies to improve : a.Written health information – use plain language guides b.Prescription drug labels – use precise instructions c.Verbal communication – use ‘teach back’ method d.Risk communication – use natural frequencies

37. WRITTEN HEALTH INFORMATION 37  Large font size-12pt or above  Avoid italics and capital letters  Use headings and sub-headings  Common not technical language  Glossary of medical words  Context before facts  Involve target audience in the design of materials  Interactive to engage reader  Use active voice  Simplify medical diagrams  Culturally sensitive visual illustrations Doak, C. C., Doak, L. G. and Root, J. H. (1996). Teaching patients with low literacy skills. 2nd Ed. Philadelphia, J.B. Lippincott.

38. IMPROVING HEALTH LITERACY There is good quality evidence to support strategies to improve : a.Written health information – use plain language guides b.Prescription drug labels – use precise instructions c.Verbal communication – use ‘teach back’ method d.Risk communication – use natural frequencies

39. PRESCRIPTION DRUG LABELS 39  US study of 400 native English speaking primary care patients, lower socio-economic group. (Davis et al Archives 2006)  50% misunderstood commonly used prescription labels  If instructions are precise and explicit understanding increased from 53% to 89% correct (Davis et al JGIM 2008) RefMichael S. Wolf; Terry C. Davis; Patrick F. Bass; Laura M. Curtis; Lee A. Lindquist; Jennifer A. Webb; Mary V. Bocchini; Stacy Cooper Bailey; Ruth M. Parker Improving Prescription Drug Warnings to Promote Patient Comprehension Arch Intern Med. 2010;170(1):50-56.

40. IMPROVING HEALTH LITERACY There is good quality evidence to support strategies to improve : a.Written health information – use plain language guides b.Prescription drug labels – use precise instructions c.Verbal communication – use ‘teach back’ method d.Risk communication – use natural frequencies

41. VERBAL COMMUNICATION 41 Roter, D. L., Erby, L., Larson, S., et al. (2009). "Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning." Patient Education and Counseling 75(3): 392-397.  Medical dialogue can be challenging: - Unfamiliar medical terms - Complex and dense language - Fast-paced monologue

42. VERBAL COMMUNICATION 42 Roter, D. L., Erby, L., Larson, S., et al. (2009). "Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning." Patient Education and Counseling 75(3): 392-397. Strategies to enhance understanding for patients with low literacy:  “Teach-back” – “Please tell me in your own words..”  Personalise medical information (e.g. “You’ve already had a blood test and now we are talking about a more invasive test”)  More interactive dialogue – patients offered more frequent speaking turns  Shorter, less dense blocks of information  BUT...patients with higher literacy may not benefit from these techniques

43. IMPROVING HEALTH LITERACY There is good quality evidence to support strategies to improve : a.Written health information – use plain language guides b.Prescription drug labels – use precise instructions c.Verbal communication – use ‘teach back’ method d.Risk communication – use natural frequencies

44. RISK COMMUNICATION 5 out of 100 women will require additional treatment Use natural frequencies Gigerenzer et al 1995, Feldman-Stewart et al 2000, Fagerlin et al review 2007

45. RISK COMMUNICATION ● ● ● ● ● 5 out of 100 women will require additional treatment Of 100 women who have surgery Gigerenzer et al 1995, Feldman-Stewart et al 2000, Fagerlin et al review 2007

46. RISK COMMUNICATION ● ● ● ● ● 5 out of 100 women will require additional treatment 20% less women will required additional treatment 5% of women will required additional treatment Of 100 women who have surgery Gigerenzer et al 1995, Feldman-Stewart et al 2000, Fagerlin et al review 2007 NOT

47. RISK COMMUNICATION ● ● ● ● ● 5 out of 100 women will require additional treatment 20% less women will required additional treatment 5% of women will required additional treatment OR Of 100 women who have surgery Gigerenzer et al 1995, Feldman-Stewart et al 2000, Fagerlin et al review 2007 NOT

48. IMPROVING HEALTH LITERACY Two key areas for evidence based action: 1.To improve health communication 2.To support clinical decision making and patient involvement Broader definition of health literacy Fits within model of Patient Centred Care and Shared Decision Making Highlighted in National Health Hospital Reform Commission Report

49. IMPROVING HEALTH LITERACY Effective tools are available to support patient involvement and engagement in healthcare. 2 main types: a.Patient Decision Aids b.Intervention to promote question asking (Question Prompt Lists (QPL) / patient coaching)

50. What are patient decision aids?  Information designed to help patients make an informed choice consistent with their preferences  Booklet / video/ audio / web-based form  Include evidence based information on options and outcomes  Exercises to help patients clarify values PATIENT DECISION AIDS

51. Patient decision aids (DAs) are very effective. Systematic review of 55 DA trials showed DAs:  Improve patient knowledge and understanding of risks and benefits  Increase realistic expectations of outcomes  Reduce uncertainty in decision making  Increase consistency between patients’ values and choice  Without increasing in patient anxiety

52. PATIENT DECISION AIDS In some circumstances decision aids:  Increase adherence  Reduce unnecessary testing/ medical procedures  Increase quality of life (O’Connor et al. Cochrane Review 2009)

53. QUESTION ASKING INTERVENTIONS What are Question Asking Interventions? Interventions to encourage patients to ask questions and direct the content of the consultation towards their needs and concerns

54. QUESTION ASKING INTERVENTIONS What are Question Asking Interventions? Interventions to encourage patients to ask questions and direct the content of the consultation towards their needs and concerns

55. QUESTION ASKING INTERVENTIONS Kinnersley et al Cochrane review (2007) Question Asking Interventions  Increased question asking  Increased patient satisfaction (small increase)  No increase in anxiety  No increase in consultation length In some studies Question Prompt Lists (QPLs)  Enabled participants to raise more ‘sensitive’ issues during the consultation (Clayton et al 2007)

56. INVOLVING LOW LITERACY PATIENTS  Excellent evidence that DAs and QPLs support patient involvement and improve health decision making  But very little research with low literacy and low education groups  These groups are least involved in healthcare, most difficult to get to participate, form large % patient population  However, we recently completed a randomised controlled trial (RCT) ‘lower literacy’ DA among adults with low education

57. FOBT SCREENING LOWER LITERACY DA McCaffery et al NHMRC project grant, Sian Smith et al PhD. [Full project team: K McCaffery, S Smith, L Trevena, A Barratt, J Simpson, D Nutbeam]

58. * No formal educ qualifications, intermediate school certificate, technical/ trade qualification Community sample: adults 55-64 years n= 585 Lower education levels* Control: Govt screening booklet FOBT screening kit Decision Aid FOBT screening kit Knowledge Informed choice Involvement in decision making Psychosocial outcomes Screening behaviour (FOBT completion) 2 weeks 3 months Trial design

59. Low education/ literacy DA trial: Results  DA increased adequate knowledge by 38% ( 56% DAs vs control 18%)  DA increased informed choice by 22% (adequate knowledge, choice consistent with attitudes 34% DA vs 12% control)  DA increased preferences for shared decision making (P=0.04)  No difference in uncertainty in decision making and anxiety - low in both groups  Acceptability of DA high (>90%) (Smith, McCaffery et al BMJ, accepted July 2010)

60. CONCLUSIONS  Possible to design DAs for low education / low health literacy consumers to make informed choices  Even though this involves communicating complex medical information  More research in general and to supporting patient involvement in low health literacy groups  Although field is rapidly developing, evidence available to support action now: Written health communication Prescription drug labels Verbal communication Risk communication Supporting patient involvement

61. Goal for Public Health & Medicine CLOSE THE GAP Patient skills + Health system Evidence + Practice

62. 62 THANK YOU

63. EXTRA SLIDES 63

64. LITERACY AND EQUITY 64 WHO Commission on the Social Determinants of Health (2008). Closing the gap in a generation. Geneva: World Health Organisation. http://www.who.int/social_determinants/thecommission/finalreport/en/index.htmlhttp://www.who.int/social_determinants/thecommission/finalreport/en/index.html Literacy plays a pivotal role in determining equities in health in both rich and poor countries “Achieving greater health literacy in the population is integral to improving the health of disadvantaged populations and to tackling health inequalities” (*Coulter and Ellins 2007, BMJ)

65. ADVANCING HEALTH LITERACY IN AUSTRALIA 65 National Health and Hospitals Reform Commission (2009). A Healthier future For All Australians