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Navigating our way to equity in the health system and beyond: #CPHCE takes on health literacy

How can the health system help to build community literacy? How might this affect people’s capacity to act on information needed to make public health decisions – including on the big issues, such as climate change, globalisation and economic policy?

And how might improving the health literacy of organisations and systems help to tackle health inequities?

These and other big-picture questions are on the agenda of a forum to be hosted by the Centre for Primary Health Care and Equity (CPHCE) at the University of NSW, in Sydney this Wednesday.

Croakey editor Dr Ruth Armstrong will live-tweet and report from the Forum for the Croakey Conference News Service.


Ruth Armstrong writes:

A recent news item on SBS television showed an initiative based on the NSW South Coast, in which a group of adults whose first language was not English toured a hospital and received basic education about how and where to access care when they needed it.

The participants interviewed mentioned language as their main barrier to navigating their health needs – understandably given the group’s background – but the reporter made a startling and more general claim: that “sixty percent of Australians have a poor understanding of what to do when they get sick, and where to go to get better (sic).”

The figure comes from the 2006 ABS Adult Literacy and Life Skills Survey (ALLS), which reported a subsection on health literacy.

The ABS found that 59 percent of adult Australians overall (75 percent of those born in a non-English-speaking country) did not have adequate health literacy, defined in this survey as “the minimum knowledge and skills required to understand and use information relating to health issues such as drugs and alcohol, disease prevention and treatment, safety and accident prevention, first aid, emergencies, and staying healthy.”

An equity issue

Definitions of health literacy vary, as do estimates of the proportion of the Australian population with low levels.

A widely accepted definition from WHO is “the cognitive and social skills which determine the motivation and the ability of individuals to gain access to, understand, and use information in ways which promote and maintain good health”.

But however health literacy is defined, an important aspect of the ABS survey is consistently replicated. As well as being much more prevalent in non-native English speakers, low health literacy is associated with lower family and personal educational attainment, older age, non-participation in the workforce, and lower income.

Health literacy is an equity issue.

It’s not surprising, then, that health literacy is the topic that has been chosen a forum to be hosted by he Centre for Primary Health Care and Equity (CPHCE) at the University of NSW, in Sydney this Wednesday.

The CPHCE and health literacy

The CPHCE forum is an annual event, which aims to highlight the work of the CPHCE, and broaden the discussion of a primary care/health equity issue that comes under the Centre’s purview.

“Health literacy is emerging as an important field of research and practice that cuts across several domains of CPHCE’s work,” Executive Director of the Centre, Professor Mark Harris told Croakey.

“It’s vital to primary care, because it is closely related to the health actions that people will take. Everything they do in response to health information is related to health literacy.”

Having low health literacy makes it more difficult to participate in decision-making, comply with treatment, follow best health practices, and access preventative and other health services.

And this plays out in health outcomes.

International research has linked poor health literacy with poorer physical and mental health.

Because health literacy tends to be shared in families and social networks, disadvantage can be compounded by other problems that threaten health, such as an inability to afford health care or medicines or to make informed choices about when and how to access services.

The forum

Heading Wednesday’s program, and providing inspiration for the forum’s discussions is Don Nutbeam, Professor of Public Health at the University of Sydney, who will present the annual Ian Webster “Health for All” Oration. 

Professor Don Nutbeam

Having had a distinguished career in public health academia and policy in the UK and Australia, Nutbeam’s research has included interventional studies in schools and communities around the world. His work has tracked the international evolution of thinking and practice in health literacy since the 1990s.

Recent projects have included collaborative research to evaluate how different countries address health literacy via national strategies, and involvement in research projects on the efficacy of digital platforms and telehealth for effectively boosting patients’ understanding of, and response to health information.

The discussion to follow will be chaired by the Director of The CPHCE, Associate Professor Freddy Sitas. Sitas’ background is in cancer epidemiology and control, and one of his many hats includes being a Chief Investigator on the Cancer Lifestyle, Evaluation And Risk Study (CLEAR).

He told Croakey he believes we have a long way to go in Australia in getting our messages through about cancer – from prevention, to causation, to treatment options, to prognosis.

Health care: a not-so-level playing field

According to Professor Mark Harris, the primary aim of the forum is to bring participants together, to share and learn about practical solutions to support health literacy in the health sector.

Harris has uniquely practical form in the game, having worked for many years with people with some of the greatest need for health literacy assistance in the country.

In July 2018 he was awarded Officer of the Order of Australia (AO) in the Queen’s Birthday Honours, for “distinguished service to education, and to the community, in the area of public health care, evidence-based practice, and equity, as an academic and researcher, and to refugees”.

His work with refugees is very hands-on, as a volunteer GP of 18 years standing, at Sydney’s Asylum Seekers Centre where many of the patients face uncertain futures with limited English language skills and insecure access to healthcare.

Harris told Croakey that health literacy is one of the domains in which equity does not equate to equality. He said:

The concept of I treat everyone the same is not helpful. Clinicians need to tailor what they do and say to existing health literacy, plus seek to enhance existing literacy.

But the health system also needs to simplify clinical and organisational complexity, and find effective ways of building community health literacy. Solutions are not individual, but system-wide.

The more vulnerable the group the more important this is – refugees, new migrants, Indigenous people and other groups need special consideration re health literacy.

For example, people with severe mental illness die up to 20 years prematurely from cardiovascular disease. For them, support and brokering are required, and there’s a need to simplify the system.”

Domains of health literacy

Sitas and Harris told Croakey that the discussion points at the forum will be underpinned by three domains of health literacy – clinical (relating to general practice encounters), organisational (from health promotion to health care and everything in between) and community.

The panel members will be:

Nicola Dunbar, Director of Strategy and Development at the Australian Commission on Safety and Quality in Health Care (In August 2014, Australian, state and territory Health Ministers endorsed the Commission’s National Statement on Health Literacy as Australia’s national approach to addressing health literacy)

Amy Prince, Director of Planning and Performance at South West Sydney Primary Health Network (increasing community health literacy is a SWS PHN strategic goal)

• Regina Osten, Program manager for primary and chronic care at the NSW Agency for Clinical Innovation, which has produced a consumer enablement guide for healthcare providers (pictured below).

• Don Nutbeam, Professor of Public Health, University of Sydney, and

• Lou-Anne Blunden, Director, Clinical Services Integration, Sydney Local Health District.

Challenging times

The panel members are well placed to examine these issues, but we are in challenging times.

Copious amounts of information about disease prevention and management are available online and elsewhere, but it requires critical skills to evaluate the quality of information and to decide how to use it, for example, to manage obesity.

Health care is also increasingly fragmented with care models are that rapidly evolving and increasingly demanding of individual capabilities. For example, a patient or family may need to plan their care via NDIS, or coordinate services with My Aged Care packages.

Those with low health literacy may miss out on services, but can also be more vulnerable to over-diagnosis and over-treatment.

Harris stressed that system-wide responses are required to improve health literacy which, after all, is not simply related to the patient’s skills and capabilities but is also a product of the demands of increasingly complex healthcare systems. We need to find ways for everyone to get what they need, out of the care available.

“We need navigation to make that happen,” he said. “Navigation support extends to risk factors (prevention) and also to chronic disease management.”

Community is key

The third concept: that of building health literacy in the community, is important for two reasons.

Firstly, an expanded, “public health” definition of health literacy includes “the degree to which individuals and groups can obtain, process, understand, evaluate, and act on information needed to make public health decisions that benefit the community” – including on the big issues, such as climate change, globalisation and economic policy.

And according to Harris, community is key to everyone’s health literacy. As he told Croakey:

Health literacy resides in the community, not in individuals. An individual’s health literacy depends on all the resources they have to draw on.”

A wish list

When asked for a wish list of forum outcomes, Harris and CPHCE colleague, Associate Professor Jane Lloyd, came up with the following:

  1. Recognition of the need to be responsive to diverse patients’ needs (language, culture and health literacy) if we are to and provide opportunities for equitable patient engagement.
  2. Monitoring of the harms of the disparity between the literacy level of patients and their carers and complexity of information required by health services.
  3. Development and evaluation of interventions to address these disparities in health care including those designed to improve communication, decision making and improve navigation to services and programs.
  4. Greater action to address low health literacy at an organisational level, including service design and patient engagement to support patients with low health literacy.

* Preparation of this article was assisted by an interview with Associate Professor Freddy Sitas and Professor Mark Harris, and written responses from Professor Mark Harris and Associate Professor Jane Lloyd.


Croakey editor Dr Ruth Armstrong is covering the #CPHCE forum for the Croakey Conference News Service.

Follow the news on Twitter at #CPHCE, @cphce_nsw, and @DrRuthAtLarge. Here you can read all of Croakey’s previous stories on health literacy.