Good health literacy is vital in improving individual and population health.
What can clinicians do to promote it?
Rheumatologist Dr Rachelle Buchbinder had had a small but growing interest in health literacy for a number of years when one afternoon she handed over a quality-of-life survey to one of her long-time patients.
She asked if he would complete it for her and the reaction was a flash of anger and immediate refusal.
Dr Buchbinder didn’t think much more about it, until he came back six months later with startling news.
“He confided in me that the reason he had declined was that he couldn’t read or write. His wife had died, he lived alone, and had no children. His wife never knew. No one ever knew”, Dr Buchbinder tells the MJA.
It slowly dawned just what had been happening when for years she had been giving him things to read and he had never had his “glasses”.
The event prompted Dr Buchbinder to start thinking about the implications for how we envisage health literacy.
Despite an inability to read or write, her patient had managed to negotiate the health system and his own health very well during the decade she had been treating him. He was turning up to his appointments, he was taking his meds, and he was having his blood tests.
“He’d actually worked out a way of managing his health with no literacy. But he had other stuff in his head that meant he could work it out.”
The definition of what it means to be health literate varies from organisation to organisation, but in all cases it rests on the ability of an individual to negotiate the health system and find and use health knowledge.
The US National Library of Medicine describes it 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”.
In this way it can encompass literacy, numeracy, motivation, social skills and all other attributes necessary to be able to decisions for your health. But as shown by Dr Buchbinder’s experience, what it means in practice is very dependent on the individual and their context.
As many as 59 per cent of Australians have poor health literacy, according to the 2006 Australian Bureau of Statistics’ Adult Literacy and Life Skills Survey.
In other words, nearly six out of 10 Australians don’t have the skills necessary to properly make use of health providers, services, information or tools.
Research has shown that people who score low on the current measures of health literacy have higher rates of chronic disease, including diabetes and cardiovascular disease.
Along with higher rates of morbidity and mortality, they have poorer health knowledge, poorer self-care and are less likely to participate in preventive health activities. They are more likely to miss appointments, make medication errors and have higher rates of hospital admissions.
“There’s a whole raft of poor health outcomes that low health literacy is associated with, independent of socioeconomic position, income and education”, says Associate Professor Kirsten McCaffery, who recently established a multidisciplinary health literacy research network at the University of Sydney.
People from lower socioeconomic backgrounds are more likely to have lower health literacy standards, as are Australians living in regional and remote parts of the country.
Dr Dennis Pashen is the director of medical services, rural, with Queensland’s South Burnett and Darling Downs Health Service, and says it is a major impediment to providing health services outside major urban areas.
“When you’re looking at the burden of disease in our community, a lot of it is self-induced disease”, he says.
“Our compliance rates are poor and the compliance rates for healthy lifestyles are diminished as well. If you combine that with big population health issues such as obesity and infectious diseases, it has a massive impact on the health system.”
In his own experience, he says it is particularly difficult when sick patients sign themselves out of hospital against advice — something he says often comes down to communication issues associated with poor health literacy.
The concept has been relatively slow to attract attention and research funding in Australia, but has been a public health focus for more than a decade in North America and the United Kingdom.
A 2004 review of health literacy by the US National Academies, Health Literacy: A Prescription to End Confusion, cited the practical problems poor understanding can cause: a mother misreading the antibiotic bottle label given to treat her daughter’s inner ear infection on a twice daily basis and pouring the liquid directly into the 2-year-old’s ear; a woman presenting to emergency with abdominal pain but leaving after being told she would need an exploratory laparotomy, claiming that she refused to be a “guinea pig”.
Research has already indicated the need for simpler medicine labels and more clearly written medical information, with two-thirds currently written beyond the level of the average reader.
But clinicians are the most trusted source of health information so what can be done in the clinic to identify and help overcome low health literacy?
Being aware of the problem is an important beginning, says Professor McCaffery.
“In the last few years we’ve definitely seen an increasing awareness of this in Australia. But I still think that clinicians underestimate the problem in their patients. I think with the busy-ness of consultations and the challenges involved, it’s not easy to use best practice strategies.”
As part of raising awareness, Professor McCaffrey is helping to coordinate an international conference for clinicians and researchers on the topic at the University of Sydney’s Charles Perkins Institute in November.
While she points to some simple practical steps clinicians can take to ensure their patients understand the information discussed during consultations (see Box), she says the evidence to support the most effective strategies for fostering health literacy is still being compiled.
The first tranche of research sought to describe the problem, the second wave is only now focusing on the interventions.
“We’re still trying to find strategies for doctors and patients to improve understanding and health behaviour”, Professor McCaffery says.
In one of the biggest initiatives now underway, last month the Victorian Minister for Health, David Davis, launched a new research project by the Department of Health together with Deakin and Monash universities.
Ophelia Victoria (OPtimising Health LIterAcy) is working with health professionals and patients at eight Victorian sites including Barwon Health to identify the best interventions for improving health understanding.
Dr Buchbinder is one of the project’s leaders, along with Deakin’s Dr Richard Osborne.
In her own practice, Dr Buchbinder says the discovery that one of her patients had never been able to read but had kept it a secret and been able to successfully negotiate the health system for at least 10 years prompted her to re-examine her approach to patient understanding in consultations.
“It made me much more aware in my practice about health literacy and finding out about what patients knew and what I needed to know to make sure they were safe and doing what needed to be done”, she says.
“I can’t teach them to read and write, but I can make sure they’ve got a GP who understands and I can make sure that they’re able to understand what they need to do for their disease.”
How to foster health literacy
Associate Professor Kirsten McCaffery says there are a number of simple practical steps clinicians can take to help patients improve their understanding and make better informed decisions.
- Use plain language and avoid medical jargon
- Use Teach-Back, asking patients to explain what you’ve just told them; ie, “Just so we’re clear, can you explain to me what you think I’ve just said?”
- Present information in easily digestible chunks, perhaps over two or three consultations, and limit it to key points
- Encourage patients to ask questions and to say when something isn’t clear