The notion of health literacy is more complicated than it might at first sound, being about much more than whether any individual can understand what is written on their pill packet.
A recent systematic review of health literacy and public health makes it clear that there are many ways of approaching the concept. The review identified 17 definitions of health literacy and 12 conceptual models.
It cites a 2000 paper by Don Nutbeam proposing three types of health literacy:
• Functional health literacy: the basic skills in reading and writing that are necessary to function effectively in everyday situations
• Interactive health literacy: more advanced cognitive and literacy skills which, together with social skills, can be used to actively participate in everyday situations, extract information and derive meaning from different forms of communication
• Critical health literacy: more advanced cognitive skills which, together with social skills, can be applied to critically analyse information and use this to exert greater control over life events and situations.
Perhaps a fourth category could be added: policy health literacy, or the ability of policy makers, whether in the health or other sectors, to take into account the impact of their decisions upon the population’s health.
Meanwhile, Mae Hurley, editorial services manager at Ragg Ahmed, reports below on her investigations into efforts to improve health literacy in Australia and abroad. At the bottom of her article are some links to further reading.
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What does it take to improve health literacy?
Mae Hurley writes:
The doctor asked the patient if he understood and he said ‘yes.’ But after leaving the clinic, he isn’t so sure about the response he gave his doctor.
Was he supposed to keep taking his old medications, along with the new prescription? And what would happen when he went to see the specialist?
This kind of scene plays out every day in health settings across the country. Patients leave their GP or hospital appointment confused, and not quite sure they understand their condition, their medications or what they need to do.
Only about 40 per cent of Australians have an adequate level of health literacy, according to the Australian Bureau of Statistics. This means that around 60 per cent of people have trouble understanding letters about test results, following directions on medicines, or discussing treatment options with their doctor.
“Often people walk out of a consultation and they don’t have the confidence to say, ‘Look, I don’t have any idea what you’re talking about,’” says Professor Helen Keleher, President of the Public Health Association of Australia and Head of Health Social Science at Monash University.
Sometimes it’s because patients don’t understand the medical jargon doctors use. Sometimes patients feel that if they ask too many questions, the doctor will become impatient. Or maybe patients are unfamiliar with a test or process, and not sure what’s going to happen to them.
A communication mismatch essentially lies at the heart of health literacy, the knowledge and skills needed by a person to make sense of, and act on, health information.
Organisations have a role
While it’s mainly been up to the individual to decipher the health messages they receive, there’s now a growing awareness that organisations need to meet their share of the responsibility too.
Last month, the US Institute of Medicine released a discussion paper on attributes of a health literate organisation. It outlines ten specific areas where organisations can address and directly incorporate clearer communication into their structure and everyday practices, providing what Cindy Brach, lead author of the paper, calls a ‘system-level change.’
This includes confirming that patients understand what’s going on, and developing evaluation measures around communication. “An organisation should always be asking you if you want assistance,” Brach says, “not waiting for you to ask for the help.”
Creating documents, websites or other content that’s accessible to people is often easier said than done. Keleher says that information seems written for people with PhDs. This is because health professionals often think that other people are just like us, she says, “but they’re not.”
Implications for Indigenous health
Dr Alyssa Vass grapples with many of these challenges, and more. A health educator working with Indigenous groups in the Northern Territory, Vass wants to find ways to bridge the gap between a Western health system dominated by English, and Indigenous communities that still speak their native languages as their first language.
But it’s not only language that can be a cause for misunderstandings – it’s the different perspective or understanding of health in general, a health ‘worldview’.
The Western health worldview is biomedical and scientific, generally based on physical and chemical processes, whereas an Indigenous health worldview can often take in spiritual health and different ideas about sickness and wellbeing. These two perspectives usually don’t meet when doctors and nurses are interacting with patients day-to-day, nor in community health promotion campaigns.
Vass says that in the NT there has been a lot of focus on using simple English, leading to a ‘dumbing down’ of concepts, which some people mistakenly think makes the information more accessible.
“But people actually need more information, not less,” she says. They need more context, because without it, it’s harder to understand the health worldview the information comes from.
Using pictures
One way to cut across cultural boundaries is to use pictures. But even here, we can’t assume that they will be universally understood.
An image of a body organ by itself can be confusing, without contextualising it within the human body. Drawing microscopic creatures in larger than life size assumes knowledge about the microscopic world we can’t see.
“We forget that images are also a language,” Vass says. And as for placing a dot painting on a poster to make it more ‘culturally- appropriate,’ Vass points out that “It might help with making people more comfortable with engaging with the poster, but not impart any new information.”
In 2009, the National Health and Hospitals Reform Commission recognised health literacy as an important part of strengthening consumer engagement. Their report recommended health literacy be a part of the national curriculum and national skills assessment. Health literacy also gets a mention in the federal government’s National Primary Health Care Strategy, under the framework of prevention.
“There are no definitive strategies yet,” says Keleher, “There’s a long way to go, but awareness is increasing.” She believes health literacy should be part of accreditation, ensuring that all organisations from hospitals and aged care centres right down to the local GP understand its importance.
This is what the Joint Commission, the US body that accredits health providers, did last year with hospitals. Hospitals now need to identify, record and meet their patients’ communication needs, and moreover, ‘respect the patient’s right to receive information in a manner he or she understands.’
Brach, also a Senior Health Policy Researcher at the Agency for Healthcare Research and Quality, says it’s getting beyond awareness stage in the US and they are now developing measures and implementation tools. “It’s now something you have to pay attention to.”
The only danger, says Vass, is if health literacy becomes just another risk factor for an organisation to tick off, something that may burden patients. “There’s already so much of a power imbalance and almost blame on patients for being unwell,” she says. “Health literacy could potentially be another one of those things.”
But increasing organisation focus on health literacy is a step in the right direction. Brach reminds us we all have a stake in this. “It’s not just a matter of people who have limited literacy or those who are cognitively declining,” she points out. “It’s all of us who are faced with a new diagnosis, or not feeling well, and our ability to process information drops.”
It’s something that will affect all of us at some time in our lives.
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Links for this article
ABS statistics on health literacy
http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Main+Features20June+2009
US Institute of Medicine, Attributes of a health literate organisation discussion paper
http://www.iom.edu/Activities/PublicHealth/~/media/Files/Activity%20Files/PublicHealth/HealthLiteracy/10attributes.pdf
Alyssa Vass’s paper on health, Indigenous Australians, language and worldview
http://www.healthpromotion.org.au/journal/journal-downloads/article/1-hpja/395-health-literacy-and-australian-indigenous-peoples-an-analysis-of-the-role-of-language-and-worldview
US Agency for Healthcare Research and Quality, Health literacy universal precautions toolkit
http://www.ahrq.gov/qual/literacy/healthliteracytoolkit.pdf
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PS from Croakey
Meanwhile, this meta analysis of 60 studies of health communications strategies, published in 2008 in the American Marketing Association’s Journal of Public Policy and Marketing, is a reminder that “one size does not fit all”. It emphasises the need to tailor communications.
It says that men and women, for example, respond differently to health communications:
“Specifically, women respond to emotional messages with social consequences for oneself or health consequences to near and dear ones, whereas men are more influenced by unemotional messages that emphasize personal physical health consequences. Taken together, these findings offer many opportunities to tailor health communications for different target audiences.”
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April 24, note from Croakey: This post has been slightly edited in response to a request from the author
This is a subject very close to my heart. Indeed, a practical, but hopefully less common situation these days, is pharmacists giving patients consumer medicine information leaflets, without going through and highlighting, in plain English, the, usually, 4-5 key points regarding safety and/or things to look out for by way of potential side-effects.
In my specific area of professional interest, having published several book on the subject for health professionals I am just now setting up the publishing process for what I believe is the first of its type, namely a book I have written, in plain English, to explain directly to pregnant women, the risk versus benefit issues surrounding safety of medicines used during pregnancy, including issues relevant to specific medicines. Frankly, in the area of medicines used in obstetrics, as in many other medical areas, people can be overwhelmed and confused with the medical “gobbledygook” that often accompanies explanations given by health professionals, so I think the concept of well-informed plain English guidance is essential in assisting the community to achieve a greater degree of health literacy.
Ron Batagol, Pharmacy and Obstetric Drug Information Consultant