Professor Don Nutbeam, Vice Chancellor of the University of Southampton in the UK, spoke to the HARC network in April 2010 to help us consider how to improve healthcare delivery for people with low health literacy. HARC stands for the Hospital Alliance for Research Collaboration. HARC is a collaborative network of researchers, health managers, clinicians and policy makers based in NSW, Australia managed by the Sax Institute. HARC Forums bring members of the HARC network together to discuss the latest research and analysis about important issues facing our hospitals. For more information visit saxinstitute.org.au.

1. The evolving concept
of health literacy
Professor Don Nutbeam
April 2010

2. What we need to know
• It can not be said more
eloquently..
• “….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”
2

3. Presentation Objectives
• To answer some questions
• What is the relationship between literacy and health
• What is health literacy and why is it important?
• How can health care providers improve service delivery for
people with low health literacy?
• What are the implications for health care policy and
practice
3

4. What is literacy?
• Functional literacy is defined in terms of the basic skills in reading and writing
and the capacity to apply these skills in everyday situations
How do we measure literacy?
• Literacy can be measured in absolute terms (distinguishing between those who
can read and write basic text and those who cannot) and
• In relative terms by assessing the skill differences between adults who are able
to perform relatively challenging literacy tasks and those who are not.
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 4

5. Relative differences in skills based 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, greater ability obtain relevant
information, derive meaning, and apply new information to changing
circumstances
Critical literacy
• most advanced cognitive and literacy skills, critical analysis of information,
ability to use information to respond, adapt and control 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.
5

6. Literacy and Health
• Relationship between low literacy and a range of health
related outcomes well established
• Some indirect effects related to employment and lifetime
income
• Some direct effects*
– Engaging in preventive health practices
– Early detection of disease
– Access to and use of health care services
– Medication adherence and chronic disease management
*Dewalt DA et al Literacy and health outcomes: a systematic review of the literature. Journal of
General Internal Medicine, 19. 128-39 2004
6

7. Literacy and Health
• “People who read at
lower levels are
generally 1.5 to 3 times
more likely to have an
adverse (health)
outcome as people who
read at higher levels”*
• *Dewalt DA et al Literacy and health outcomes: a
systematic review of the literature. Journal of General
Internal Medicine, 19. 128-39 2004
7

8. Literacy and health equity
• Failure to address the impact of
literacy on health may inadvertently
exacerbate existing inequalities
• Commission on Social Determinants of Health:
Education and the life-course
– “Removing the numerous barriers to
achievement of primary education will be
a crucial part of action on the social
determinants of health”
– Literacy has “central role in health equity”
in countries rich and poor
• Promoting literacy is a public health
goal
http://www.who.int/social_determinants/resources/interim_statement/
en/index.html
8

9. Literacy is context and content specific
• More accurate to talk about literacies for example:
– financial literacy,
– Media literacy,
– IT literacy (new literacy) and,
– health literacy
9

10. What is health literacy?
content specific literacy in a health context.
Short version:
“the ability to access, understand, and use
information for health”
• Even where a person has advanced literacy skills their
ability to obtain, understand and apply health information
in a specific health context may be poor
see: Nutbeam D. Health Promotion Glossary (1999) Health Promotion International, 13(4): 349-364. 1999 (also -
WHO/HPR/HEP/98.1)
10

11. Health literacy is also context and content specific
– related to age and stage of life
a person with diabetes who
a pregnant woman attending
is receiving patient education,
ante-natal classes
a young person receiving
health education
on illicit drugs at school.
11

12. Health literacy is not new in Australia –
health literacy goals for Australia in 1993
12

13. Why do we care about health literacy?
• Review of effectiveness of strategies for informing educating and
involving patients* indicates mostly positive results from different
strategies
• Improving clinical decision-making, through shared and informed
decision making using decision-aids and other educational
interventions
• Self care and self management based on tailored patient education
• Improving patient safety primarily through improvement in the use of
medicines
• Improving health literacy is described by authors as the “key” to
improved patient engagement
*Coulter A, Ellins J. 2007. Effectiveness of strategies for informing, educating and involving patients.
BMJ 335:24-7
13

14. Summarised findings of systemic reviews on effectiveness of
strategies to inform, educate and involve patients in their treatment*
Total Effects on Effects on Effects on Effects on
Topic number patients’ patients’ use of health health
of reviews knowledge experience services behaviour and
found health status
Reported in Reported in Reported in Reported in
Improving 13 Reviews: 16 reviews: 14 reviews: 13 reviews:
health 25 10 positive 10 positive 9 positive 4 positive
literacy 2 mixed 5 mixed 3 mixed 6 mixed
1 negative 1 negative 2 negative 3 negative
Improving Reported in Reported in Reported in Reported in
clinical 22 10 reviews: 19 reviews: 10 reviews 8 reviews:
decision 8 positive 12 positive 6 positive 2 positive
making 2 mixed 6 mixed 4 mixed 1 mixed
1 negative 5 negative
Improving self Reported in Reported in Reported in Reported in
care and self 67 19 reviews: 40 reviews: 25 reviews: 60 reviews:
management all positive 24 positive 14 positive 39 positive
of chronic 11 mixed 9 mixed 15 mixed
disease 5 negative 2 negative 6 negative
Reported in Reported in Reported in Reported in
Improving 18 4 reviews: 1 review: 3 reviews: 17 reviews:
patient safety all positive positive 2 positive 8 positive
1 negative 9 mixed
14
*Coulter A, Ellins J. 2007. Effectiveness of strategies for informing, educating and involving patients. BMJ 335:24-7

15. Two distinctive conceptualizations of health
literacy*
The concept of health literacy emerged from different roots:
• in clinical care, mainly from the US
• in public health, from Australia, Canada, Switzerland and the
UK
• The two different roots led to quite different
conceptualizations of health literacy as a “risk” and as an
“asset”
*Nutbeam D. 2008. The evolving concept of health literacy. Social Science
and Medicine. 67. 2072-78
15

16. Health literacy as a clinical “risk factor”
• Emanating from concerns about the impact of low literacy on
patient care
• health literacy conceptualised as a “risk factor” that needs to be
mitigated,
• Defined as set of capacities that act as a mediating factor in
achieving pre-determined health and clinical outcomes*
• Response takes the form of “risk assessment” and tailored clinician
communication
*For a thoughtful examination and critique of established definitions see:
Barker D, The Meaning and Measure of Health Literacy. Journal of General Internal Medicine
21.8, 878-883. 2006
16

17. Conceptual model of health literacy as a risk
Improved clinical outcomes
Enhanced capability
for self management,
improved compliance
Tailored
health/patient
communication and
education
Health literacy assessment -
Health-related reading fluency,
numeracy, prior knowledge
17

18. Health literacy as a clinical “risk factor”
• Progressive improvement in understanding of health
service organisation and environmental factors that
exacerbate or minimise impact of low literacy, for example:
– ease of making appointments
– functional organisation of clinics
– use of appropriate communication materials/signage
18

19. Conceptual model of health literacy as a risk
Improved clinical outcomes
Enhanced capability
for self management,
improved compliance
Tailored Improved access to
health/ patient health care, and
communication and productive interaction with
education health care professionals
Health literacy assessment - Organizational practice
Health-related reading fluency, sensitive to
numeracy, prior knowledge 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. 19
American Journal of Health Behaviour; 2007; 31 (Supplement 1): S19-26

20. Health literacy and clinical care
• Research over past 15 years (mostly in the US) has led to more
sophisticated understanding of poor literacy and its association with a
range of health practices and outcomes – established case for action
• Demonstrated that rapid assessment of health literacy is feasible in
normal clinical practice
• Tested a range of intervention studies specifically designed to address
consequences of low literacy provide mostly positive results*, in many
cases limited by poor study design.
*Pignone, M., DeWalt, D., Sheridan, S., Berkman, N. & Lohr, K.N. (2005). Interventions to improve health outcomes for
patients with low literacy. Journal of General Internal Medicine, 20, 185-192.
Coulter A, Ellins J. 2007. Effectiveness of strategies for informing, educating and involving patients. BMJ 335:24-7
20

21. Health literacy in public health
• Origins in contemporary 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.
21

22. Developing functional health literacy – a simple linear model
Improved health outcomes,
healthy choices
and opportunities
Changed health
behaviours and
practices
Improved
Health Literacy
Developed
knowledge
and capability
Tailored health/patient education to promote active
engagement in health decision-making
Established population literacy –
reading fluency, numeracy,
existing knowledge 22

23. More advanced concepts of health literacy*
Functional health literacy
• ability to apply basic literacy skills in reading and writing in
everyday health decision-making,
• ability to respond successfully to the communication of factual
information on health risks, and on how to use the health system;
Supported by health/patient education
• directed towards improved knowledge of
health risks and health services, and
compliance with prescribed actions
(eg clinician advice, traditional health education)
*Nutbeam D. (2001) 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
23

24. More advanced concepts of health literacy
Interactive health literacy
• Ability to apply more advanced cognitive and literacy skills to
independently obtain relevant health information, derive
meaning, and apply information to personal and family health
circumstances.
Supported by health/patient education
• Directed towards improving personal
capacity to act independently on
knowledge, to improving motivation
and self confidence to act on advice
received (eg school health education).
24

25. More advanced concepts of health literacy
Critical health literacy
• Ability to apply more advanced cognitive and literacy skills to the
critical analysis of health related information,
• Ability to use information to exert greater control over a broad
range of health determinants – personal and social.
Supported by health/patient education
• Directed towards provision of information on
full range of determinants of health, and
assessment of opportunities to achieve
change in these determinants (personal
and community capacity building)
25

26. Developing interactive and critical health literacy skills
Improved health outcomes,
health services and clinical practice
Active participation in
Engagement in health decision making,
social Changed health changing service
action/advocacy behaviours and expectations and
for health practices practices
Improved
Health Literacy
Developed
knowledge
and capability
Health education directed to knowledge and personal skills development to promote
active engagement in health decision-making
Established population literacy –
reading fluency, numeracy,
existing knowledge 26

27. Health literacy in Australia in 2009
27

28. Health literacy – four quick wins
• In health and clinical care
– maternal health literacy,
– patient/consumer education
• In schools – health literacy measurement
• In the community – adult basic skills
28

29. Case study 1 – maternal health literacy*
Maternal health literacy:
• The ability of women “to access understand and use
information in ways that promote and maintain their
health and that of their children”
• Study of content of and context for ante-natal education
in a major Sydney maternity hospital
• Interviewed pregnant women, women in the first year
after childbirth, ante-natal educators, and early childhood
nurses
• Explored the content and delivery learning using health
literacy framework
*Renkert S, Nutbeam D (2001) Opportunities to improve maternal health literacy
through antenatal education. Health Promotion International 16.4. 381-8 29

30. Case study 1 – maternal health literacy
Key findings:
• Little account taken of variation in underlying literacy and
language skills at commencement
• Content largely confined to pregnancy and childbirth
• Teaching methods mostly didactic, transfer of information,
and promotion of compliance with preferred practice
• Relatively little emphasis on the development and mastery
of specific skills, or autonomy in decision-making
• Lack of time cited most frequently as reason for limits on
content and methods
30

31. Case study 1 – maternal health literacy
Key conclusions
• Importance of health literacy screening tool to assist in
pre-assessment of existing “maternal health literacy”
• In method, education better tailored to existing literacy
level of group - enable greater participation in the
learning process
• In outcome focus on the ability of women to obtain and
evaluate information from a variety of sources, and on
development of skills and confidence to act on
information
• In content, recognise that early parenting is also
important
31

32. Case study 2
Skilled for Health (UK)
Skilled for health
• Integrates goals of health
improvement with improving
literacy, language and numeracy
(LLN) skills of adults
• Cross government-voluntary
sector initiative combines adult
LLN learning with people‟s wish
for a better understanding of
health
http://www.dfes.gov.uk/readwriteplus/embeddedlearning/
32

33. Skilled for Health Evaluation
Key findings:
• SfH targets and recruits individuals who do not
traditionally participate in public health or
adult learning programmes.
• That health is a significant “hook” into learning
for participants,
• That participants‟ health knowledge increased
significantly after undertaking a SfH
intervention
• That the programme opens up two kinds of
learning progression routes – improvement in
skills levels and high motivation to continue
learning, with 25% registered on further
courses.
• That the programme had an 80% retention rate
among participants.
http://www.continyou.org.uk/files/file/reports/skilledforhealthev
al.pdf
33

34. Summary remarks
What is the state of science – the known-knowns
• Good research in clinical settings linking poor health- related
literacy with range of clinical outcomes
• Rapid assessment of health literacy is feasible in normal clinical
setting
• 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)
34

35. 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 context specific self-
efficacy (confidence/capacity to act)
• Continue to broaden intervention development and
evaluation outside of health care setting and disease
groups into schools, adult learning, community
development – eg maternal health literacy, school
health literacy etc
35

36. Summary remarks
Where to from here in policy and practice?
• Health literacy fundamentally dependent upon
levels of basic literacy in the population – make
links between these two social goals,
• School health education provides important
foundations for health literacy, make it count
through measurement
• Adult education and skills development programs
can provide ideal partnership
36

37. Summary remarks
Where to from here in policy and practice?
In clinical practice:
• target obvious priorities for patient engagement in decision-making
and self care (eg diabetes, maternal and child health)
• Developing self confidence to act on knowledge requires broader range
of educational and communication methods than commonly used (eg
repeat-back)
• Effective communication can be supported by service management and
organization that is “literacy sensitive” (eg minimise/simplify form-
filling)
37

38. The end
Thank you

39. 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 task based reading
(and numeric) skills, and not on skills based literacy
• Focus on ability to comply with pre-determined behaviours
See: Barker D, The Meaning and Measure of Health Literacy. Jnl of General Internal Medicine 21.8, 878-
883. 2006
39

40. 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 required for different ages and
stages in life, and different health contexts
40

41. Measurement of health literacy
• Different measures required to distinguish between
functional, interactive and critical health literacy.
• These measures 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
41