Health literacy: Perspectives from Australia

1. Health literacy:Perspectives from Australia Don Nutbeam University of Sydney, Australia

2. “Reports that say that something hasn't happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns - the ones we don't know we don't know” What we need to know – it can’t be said more eloquently

3. Presentation objectives – to answer some questions What is health literacy ? What is the state of the science? Why is it a useful concept in public health? Where do we go from here?

4. What is literacy? What is it? • Functional literacy focuses on the ability to read basic text and write a simple statement on everyday life Why do we care? • Those who are functionally literate are able to participate more fully in society, and are able to exert a higher degree of control over everyday events How big is the problem? • Estimates of the proportion of the population in OECD countries lacking functional literacy skills range from 7% to 47%* (UNDP, 2007) *http://hdrstats.undp.org/indicators/30.html

5. Literacy and health* Relationship between low literacy and a range of health related outcomes well established Some indirect effects Employment Income Some direct effects Engaging in preventive health practices Early detection of disease Access to health care Management of chronic disease *Dewalt DA et al Literacy and health outcomes: a systematic review of the literature. Journal of General Internal Medicine, 19. 128-39 2004

6. The emergence of the concept of health literacy The concept of health literacy emerged from different roots: • in clinical care, mainly from the US • in public health, from Australia, and more recently Canada and the UK • The two different roots led to quite different conceptualizations of health literacy as a “risk” and as an “asset”

7. What is health literacy? Health literacy in clinical care • emanating from concerns about the impact of low literacy on patient care • health literacy is seen more as a risk or deficit that needs to be mitigated, • set of capacities that act as a mediating factor in achieving health and clinical outcomes.

8. What is health literacy? US Institute of Medicine* defines health literacy as: “The degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions” But recognition of social context of health literacy “based on the interaction of the individual’s skills with health contexts…and broad social and cultural factors at home, at work and in the community” *Institute of Medicine. Health Literacy: A Prescription to End Confusion. Washington DC, National Academies Press 2004

9. What is health literacy #1? Health literacy is a set of individual capabilities in four domains* Cultural and conceptual knowledge Speaking and listening skills Writing and reading skills Numeracy Focus on individual capacities indicates that health literacy may be developed (and can decline) Health literacy is partly knowledge based, and may be developed through educational intervention Health literacy is context specific and subject to influence by health care interactions and structures *For a thoughtful examination and critique of the IOM definition see Barker D, The Meaning and Measure of Health Literacy. Jnl of General Internal Medicine 21.8, 878-883. 2006

10. Health literacy and health* Development of measurement tools and “screening aids” (eg TOFHLA, REALM) Led to more sophisticated understanding of health-related literacy and its association with a range of health practices and outcomes, especially Effective management of chronic disease Compliance with medication and other health advice Participation in health and screening programs *Institute of Medicine. Health Literacy: A Prescription to End Confusion. Washington DC, National Academies Press 2004

11. Figure 1: Conceptual model of health literacy as a risk. Tailored health information, communication, education Health literacy assessment - Health-related reading fluency, numeracy, prior knowledge

12. Figure 1: Conceptual model of health literacy as a risk. Improved clinical outcomes Enhanced capability for self management, improved compliance Tailored health information, communication, education Health literacy assessment - Health-related reading fluency, numeracy, prior knowledge

13. Figure 1: Conceptual model of health literacy as a risk. Improved clinical outcomes 5. Enhanced capability for self management, improved compliance Tailored health information, communication, education Improved access to health care, and productive interaction with health care professionals Health literacy assessment - Health-related reading fluency, numeracy, prior knowledge Organizational practice sensitive to health literacy • 1. Barker D, The Meaning and Measure of Health Literacy. Jnl of General Internal Medicine 21.8, 878-883. 2006 • 2. Paasche-Orlow MK, Wolf MS. The causal Pathway linking health literacy to health outcomes. • American Journal of Health Behaviour; 2007; 31 (Supplement 1): S19-26

14. What is health literacy #2? Draws upon • broader concepts of literacy, • principles of adult education, • concepts of health promotion

15. Drawing on wider concepts of literacy* Functional literacy – • basic skills in reading and writing, capacity to apply these skills in everyday situations Communicative/interactive literacy • more advanced cognitive and literacy skills, capacity to actively participate, derive meaning, apply new information quickly to changing circumstances Critical literacy • most advanced cognitive and literacy skills, critical analysis of information, ability to use information to exert greater control over life events and situations * See for example: Freebody P, Luke A. ‘Literacies’ Programs: Debates and Demands in Cultural Context. Prospect; 1990; 5(3): 7-16.

16. What is health literacy? #2 health literacy in public health • origins in health education and health promotion • a set of capacities that enable individuals to exert greater control over their health and the range of personal social and environmental determinants of health. • health literacy is seen as an asset to be built, as an outcome to health education and communication that supports greater empowerment in health decision-making.

17. Principles of adult education • Adults have a foundation of life experiences and knowledge that can be used as as a resource, requires an understanding of learners’ experiences and communities. • Adults respond well to instructional materials that are based on students’ lives, sometimes referred to as contextualized learning, • Adults are autonomous and generally respond well to self-directionin learning, including involvement in program planning and implementation. For a good overview of adult learning principles: S Imel; Using Adult Learning Principles in Adult Basic and Literacy Education; Clearinghouse on Adult, Career, and Vocational Education 1998 http://www.cete.org/acve/docs/pab00008.pdf

18. Concepts of health promotion • Process of enabling people to exert greater control over the determinants of health • Includes actions directed at strengthening the skills and capabilities of individuals, and • action directed towards changing the social determinants of health so as to alleviate their impact on public and individual health

19. What is health literacy? • “Health literacy represents 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” • “Health literacy means more than being able to read pamphlets and make appointments. By improving peoples’ access to health information and their capacity to use it effectively, health literacy is critical to empowerment” *Nutbeam D. Health Promotion Glossary. Health Promotion International, 13(4): 349-364. 1999 (also - WHO/HPR/HEP/98.1)

20. Types of Health Literacy* *Nutbeam D. Health Literacy as a Public Health Goal: A challenge for contemporary health education and communication strategies into the 21st Century. Health Promotion International . 15; 259-67. 2000

21. Types of Health Literacy

22. Types of Health Literacy

23. Improved Health Literacy Developed knowledge and capability Tailored information, communication, education Prior understanding of individual capacity - reading fluency, numeracy, existing knowledge Figure 3: Health literacy as an asset: a simple linear model

24. Improved health outcomes, healthy choices and opportunities Changed health behaviours and practices Improved Health Literacy Developed knowledge and capability Tailored information, communication, education Prior understanding of individual capacity - reading fluency, numeracy, existing knowledge Figure 3: Health literacy as an asset: a simple linear model

25. 10. Improved health outcomes, healthy choices and opportunities 7. Changed health behaviours and practices 6. Improved Health Literacy 4. Skills in social organization and advocacy 5. Skills in negotiation and self management 3. Developed knowledge and capability 2. Tailored information, communication, education 1. Prior understanding of individual capacity - reading fluency, numeracy, existing knowledge Figure 3: Developing interactive health literacy skills

26. Improved health outcomes, healthy choices and opportunities Engagement in social action/advocacy for health Participation in changing social norms and service practices Changed health behaviours and practices Improved Health Literacy Skills in social organization and advocacy Skills in negotiation and self management Developed knowledge and capability Tailored information, communication, education Prior understanding of individual capacity - reading fluency, numeracy, existing knowledge Figure 3: Developing interactive and critical health literacy skills

27. Measurement of health literacy • Current measures (such as TOFLA and REALM) now well established in the US - useful for clinical screening, but limited for research purposes and wider population assessment • Limited in the extent to which they focus on reading (and numeric) skills, and not oral communication • Focus on ability to comply with pre-determined behaviours • If health literacy depends on the relationship between individual communication capacities, the health care system, and broader society, then measures only at the individual level are clearly inadequate. Barker D, The Meaning and Measure of Health Literacy. Jnl of General Internal Medicine 21.8, 878-883. 2006

28. Measurement of health literacy • More comprehensive measures being developed - In the US, the Health Activity Literacy Scale (HALS) includes different health related competencies in five domains such as health promotion, disease prevention, and health care systems • Different measurement tools will be required for different ages and stages in life • Different measures will be required to distinguish between functional, interactive and critical health literacy. • These measures will need to include assessment of a person’s ability to • gain access to age and context specific information from a variety of different sources; • discriminate between sources of information • understand and personalise health information that has been obtained • appropriately apply relevant health information for personal benefit

29. Summary remarks – What is the state of the science – the known knowns? • Good research in clinical settings linking poor health- related literacy with range of clinical outcomes • Some intervention trials in clinical settings demonstrate potential effectiveness and cost savings • Undeveloped but promising research outside health care settings (schools, adult education, E-learning) • Relatively little evidence of systematic incorporation of health promotion concepts and adult learning principles • Progress in development of measures of health-related literacy in clinical settings, but limited progress in development of comprehensive measures

30. Summary remarks Where to from here in research – the known unknowns • Development of measures that incorporate wider set of skills and capacities represented by health literacy - eg inclusion of measures of knowledge of social determinants of health, and knowledge related self-efficacy (confidence/capacity to act) • Continue to broaden research outside of health care setting and disease groups into schools, adult learning, community development – eg maternal health literacy, school health literacy etc

31. Summary remarks – where to from here in practice development- the unknown unknowns Health literacy fundamentally dependent upon levels of basic literacy in the population – make links between these two social goals, Developing self confidence to act on knowledge and the ability to support others requires more personal, and community-based educational outreach – incorporation of adult learning principles and health promotion concepts Promoting greater independence and empowerment requires acknowledgement of “political” aspect to education, focussed on overcoming structural barriers to health