Health literacy: whose responsibility? Professor Helen Keleher Department of Health Social Science

Literacy What is it? Functional literacy is a measure of a person’s ability to read basic text and write a simple statement relevant to 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 Literacy levels are related to public health outcomes

HEALTH LITERACY DEFINITIONS Individual level: ability to understand and to act in their own interest, such that service users have a capacity to obtain, process, and grasp the health information and services they need to make appropriate health decisions (Feinberg, 2004). System level: the actions and approaches taken by health care service providers to effectively engage and work with their current and potential service users, as well as the approaches taken to service delivery and design. There is a wealth of research from the U.S.A. and Canada about health literacy but there is little Australian research about the extent to which health organisations take health literacy into account when designing their health communications or when providing health information to service users. The amount of health information available to the population increases daily, though much of it is written for a highly literate audience. Health literacy refers to an individual's ability to read, understand, and use the information necessary to enjoy good health and to obtain adequate health care in order to maintain their health. Research into health literacy from this perspective regards health literacy as a sub-set of general literacy, with a considerable amount of this research focused on measuring individuals’ health literacy levels particularly in the U.S.A. 8 An alternative conceptualisation of health literacy defines it more broadly in terms of people’s sense of empowerment. Health literacy then represents a combination of the cognitive and social skills that enable service users to access health information and use it effectively. Health literacy should be empowering for people rather than the alternative, which is to feel disempowered by health communications that are not understandable. This is not just an inequality but also an inequity that stems from unfairness or a form of injustice.

Health literacy in Australia ABS : Adult Literacy and Life Skills Survey (ALLS) OECD measure used in several countries (2002, 2006) 4 measures of literacy that collectively contribute to an overall measure, plus 191 health-related items across four literacy domains. items related to one of the activities; health promotion (60 items), health protection (64 items), disease prevention (18 items), health care maintenance (16 items), and system navigation (32 items)

ALLS – four domains Prose literacy: Represents individuals’ ability to understand and use information from various kinds of narrative texts, including texts from newspapers, magazines and brochures Document literacy: Represents the knowledge and skills individuals require to locate and use information contained in various formats including job applications, payroll forms, transportation schedules, maps, tables and charts Numeracy: Represents the knowledge and skills individuals use to manage and deal with the mathematical demands of diverse situations Problem solving: Represents goal-directed thinking and action in situations for which no routine solution is available

Results – 2006 survey data Approximately 40% of all Australians have ‘adequate’ levels of general and health literacy 60% have less than adequate levels of literacy and health literacy 6% of Australians have high health literacy levels. Approximately 46% of Australians aged 15 to 74 years achieved less than ‘adequate’ scores for the prose domain 47% for the document domain, 53% for the numeracy domain, and 70% for the problem solving domain Taken together these findings are obviously troubling, as they suggest that the majority of Australians are not only able to demonstrate adequate health literacy skills generally, but only three in ten Australians are able to adequately demonstrate the goal-directed thinking and action needed to effectively manage non-routine situations such as those posed by new and or complex health needs The net result of such relatively poor health literacy has been consistently found to be both poorer health and poorer health outcomes (ABS, 2006)

Results – 2006 survey data Approximately 40% of all Australians have ‘adequate’ levels of general and health literacy 60% have less than adequate levels of literacy and health literacy 6% of Australians have high health literacy levels. Approximately 46% of Australians aged 15 to 74 years achieved less than ‘adequate’ scores for the prose domain 47% for the document domain, 53% for the numeracy domain, and 70% for the problem solving domain Taken together these findings are obviously troubling, as they suggest that the majority of Australians are not only able to demonstrate adequate health literacy skills generally, but only three in ten Australians are able to adequately demonstrate the goal-directed thinking and action needed to effectively manage non-routine situations such as those posed by new and or complex health needs The net result of such relatively poor health literacy has been consistently found to be both poorer health and poorer health outcomes (ABS, 2006)

The right to health The right to the highest attainable standard of health is a fundamental human right (Article 12, International Covenant on Economic, Social and Cultural Rights (ICESCR) ) Governments which are Parties to the Covenant recognise the right of everyone to the enjoyment of the highest attainable standard of health

Determinants of health literacy The social gradient Employment Living and working conditions Early years of life Education Social support Transport Ageing Social inclusion/exclusion Gender Culture Discrimination, racism, stigma Personal capacities and coping skills Quality of health system eg responses to accessible information

Is health literacy a determinant of health? A determinant describes an established causal pathway Health literacy is NOT a causal pathway – it is a proxy for education which is a determinant of health

Health literacy feeds back into health outcomes Low health literacy is thought to be a better predictor of health status than education, SES, employment, race or gender (Weiss, 2005; Partnership for Clear Health Communication, 2006)

Effects of low health literacy Both low general literacy and low health literacy engender vulnerability and stress. Low literacy predicts the degree of engagement that people with have with primary and public health services and interventions, and their self-management of, and knowledge about, chronic conditions (Keleher & Hagger 2007).

Effects of low literacy on health Direct and indirect effects Women with low literacy are at risk of larger families Low income, large families, low literacy often results in stressed and vulnerable families Low literacy is related to lower rates of economic participation Girls with low literacy who leave school early are likely to never work fulltime

Should practitioners test clients’ health literacy? Population-based surveys have established reliable profiles of general and health literacy across the population Literature suggests that possible harm outweighs benefits; therefore, clinical screening for literacy is not recommended (Paasche-Orlow & Wolf, 2007, 2008) The literature reports a range of methods and tools for assessing health literacy that have been tested with specific service user groups as well as the general population Population-based surveys conducted in Australia by and in other countries comparable to Australia (e.g. Canada, USA, etc.) have established reliable profiles of general and health literacy across the population

Positive strategies Simple strategies are available as an alternative, and should be made routine (Morris, MacLean, Chew, & Littenberg, 2006) Morris et al ( 2006), suggest the use of a single item/question to assess service users’ health literacy – How often do you need to have someone help you when you read instructions, pamphlets, or other written material from your doctor or pharmacy?

Teach back method Teach-back is a way to confirm that you have explained to the patient what they need to know in a manner that the patient understands. Patient understanding is confirmed when they explain it back to you (just google ‘teach-back method’ for more information)

The Chew approach Chew et a; (2004) suggest three questions: How often do you have someone help you read written materials regarding your health conditions? How often do you have problems learning about your health conditions because of difficulty understanding written information? How confident are you filling out medical forms by yourself?

Research (Keleher, Ayton, Joss, Thomacos) To assess the current state of health literacy awareness in Victorian health services Health information is generally written at levels that are too complex for the average person to comprehend. If follows that organisations with responsibilities for the provision of health information could be expected to take steps to ensure the health information they provide is accessible for a range of literacy levels with a focus on reaching people with low literacy levels. This paper reports findings from an online survey conducted in Victoria to examine the degree of health literacy awareness in health services and NGOs

Method Quantitative survey with open-ended questions grouped into five themes: Demographics Understanding and knowledge of health literacy Health literacy policy and practice Training, development and workforce skills Challenges and opportunities The survey consisted of questions developed by Keleher and Thomacos and Ayton and questions adapted from the AMA Ethical Force Program: Improving communication – improving care survey, the Canadian Public Health Association Health Literacy Survey, and Rima Rudd and Jennie Anderson Health Literacy Environment of Hospitals and Health Centers review tools. The survey used a purposive sampling method of agencies

KNOWLEDGE & PRACTICE 73% (n=35) were familiar with the term health literacy 20 questions exploring participant understanding of HL using a 4 point likert scale (Strongly disagree, disagree, agree, strongly agree and don’t know). For the majority of questions responses were in the correct direction – however the responses shown here indicate that when the questions drilled down beyond the superficial there was a greater variance in responses.

Health literacy can be explained by people’s level of education (n=44) This is an interesting result, given that education is regarded as being correlated with health literacy. Whether functional health literacy can be considered a proxy measure of social disadvantage is debatable. However, in a South Australian study, compared with the highest category of income and education, each group showed an increased risk of limited functional health literacy by income and education level. However, even among those with a bachelor degree or higher, around 20% were at risk of limited FHL (Adams et al MJA 2009; 191: 530–534).

Health literacy is different for men & women (n=44) The Adams et al study found that Inadequate FHL was significantly less common among females. This may be related to women’s known higher levels of caring responsibilities which includes health care of family members, their increased use of health care resources and their desire to self-care so that they can care for family members, work and juggle multiple roles which are expected of them.

People with low health literacy have higher health care costs (n=44) Studies suggest that: People with low health literacy do have higher health care costs – in US studies, they present later for treatment for example

HL in participant’s organisations 32% (n=14) participants said the term HL was used in their organisation 86% General staff discussion 64% Staff planning days 64% Guidelines for clinical practice 86% Chronic disease self management guidelines

Does your organisation have a policy on...? This is a surprising result – that of the respondents, only 17% had a policy on health communications and only 1 organisation had a policy on health literacy

Participants rating of their own need for training & development in health literacy While 54% (21) participants had received training in health literacy or health communication, most indicated that they had a need for training and development in health literacy

Participant rating of their organisation’s need for training & development in health literacy

Comments health literacy training “Our PCP would benefit in having training in health literacy for member agencies to raise their awareness and be more proactive, - explore what we can do as a partnership to support collaborative action, and - in working with consumers and community members on empowerment strategies” – Executive officer, PCP

CHALLENGES & OPPORTUNITIES 41% (n=16) Lack of information in non-print formats 46% (n=18) Lack of information that is written for CALD service users 54% (n=21) Lack of training in how to assess the health literacy of service users 49 % (n=19) Resource constraints such as appropriate print materials 51% (n=20) Lack of funding to address health literacy or health communication issues

Comments “I believe lack of time, perceived importance and funding constraints are implicated in the lack of general health literacy knowledge” – Early Intervention in Chronic Disease Co-ordinator, Community Health “Our organisation can facilitate awareness about health literacy and work with partner agencies to develop strategies to support professional development and action at a partnership and agency level - but will need to discuss these in our committees and networks, and develop it as a priority to progress action.” - Executive Officer, PCP

Conclusions from the study This data on health literacy shows that there is a need for greater awareness by providers of care and their organisations about health literacy A systems approach to understanding health literacy is indicated Organisational development Workforce development Policy development

Gaps Effects of health literacy not widely articulated within the health sector Lack of policy direction from governments Health reform documents mention HL but not what should be done Public health programs funded by governments are focused on behaviour change /lifestyles Limited if any effect on people with low literacy Tend to advantage those who are literate and therefore increase health inequities

Where should Victoria invest? A US systematic review found that most interventions (Pignone 2005) are about making health education materials easier to understand Brochures and individual approaches = downstream-midstream focus most studies were poorly designed in terms of health outcomes

Who should invest? All jurisdictions – CW, States and Territories – through Departments of Health/Human services Non-government organisations particularly those funded to deliver programs Industry – workplace projects

Broader approaches needed to make a difference Health communication is for everyone, not just those who have mid-high literacy Adult education Train health workforce in health literacy Organisations: create health literate health services and include in accreditation Develop policy to support HL action Investment in health literacy research to strengthen the evidence base Downstream Upstream

References Keleher, H. & Hagger, V. (2007). Health literacy in primary health care. Special Issue on "Comparative Approaches to Primary Health Care: Key Lessons for Australia's Primary Health Care Policy-Making", Australian Journal of Primary Health, Volume 13, Number 2, August 2007: 24-30. Partnership for Clear Health Communication 2006. Available at: http://www.p4chc.org/health-literacy.aspx Pignone, DeWalt, Sheridan, Berkman, & Lohr, 2005, Interventions to Improve Health Outcomes for Patients with Low Literacy, J GEN INTERN MED 2005; 20:185–192. Weiss, B. (2005). Epidemiology of health literacy. In JG. Schwartzberg, JB. VanGeest & CC. Wang (eds). Understanding health literacy: implications for medicine and public health. American Medical Association, AMA Press, 17-40. CSDH (2008) Closing the gap in a generation: health equity through action on the social determinants of health. Final Report of the Commission on the Social Determinants of Health, Geneva, World Health Organization