What are the critical questions for improving health literacy?
Researchers, consumers, health practitioners and policy makers will be discussing the latest developments in health literacy at this conference, to be hosted by the multidisciplinary International Health Literacy Network at the University of Sydney on November 26.
Health journalist Marge Overs will report on the event on behalf of the Croakey Conference Reporting Service.
Thanks to Associate Professor Kirsten McCaffery, one of the conference organisers, for taking time to participate in this Q and A, as a preview to the conference discussions.
Q: As previously noted at Croakey, there are many different definitions of health literacy, but perhaps the most straightforward one (thanks to Professor Don Nutbeam) is: “the capacity to acquire, understand and use information for health”. What do you think is the most useful definition?
I find Don Nutbeam’s definition the most useful for the work I do, which focuses on shared decision making. This definition emphasises different levels of health literacy including interactive/ communicative health literacy (communication and social skills) and critical health literacy (more advanced cognitive skills to enable to people to make informed decisions) in addition to functional health literacy (reading, writing, numeracy and oral literacy). Definitions vary but all recognise the functional aspects and respect that health literacy is the ability to apply those skills to make health decisions or use health information to improve health.
Q: In 2006, the Australian Bureau of Statistics found that almost 60% of adult Australians have low health literacy, which means they are not able to effectively exercise their choice or voice when making health care decisions. Why is there such a low level of health literacy in this country, and how does it compare to other places?
The levels of poor health literacy are very comparable with other developed countries. We do slightly better than the US and UK but not much. The reasons why health literacy is so poor are not well understood and there is likely to be a myriad of factors involved.
Q: Australia’s lack of progress in implementing a national approach to improve health literacy and inconsistent policy work in this area has been widely noted, including in a recent consultation paper from the Australian Commission on Safety and Quality in Healthcare. One advantage of not being at the forefront of policy initiatives in this area is that we can learn from what other countries have done, including from their mistakes. What lessons would you highlight here?
Health literacy was identified in Australia’s first set of national health goals and targets as early as 1993 although not much happened after that. In 2009 it was identified by the National Health and Hospital Reform Commission as a key factor to encourage stronger consumer engagement in health care and it has recently been highlighted as a key part of Australia’s national approach to safety and quality by the Australian Commission on Safety and Quality in Health Care.
The US has been by far the most advanced in health literacy policy, research and practice, with a major report into health literacy published in 2004 by the Institute of Medicine (Prescription to end Confusion). More recently, there has been a national action plan to improve health literacy developed by the Department of Health and Human Services (DHHS 2010), which includes legislation requiring all government documents to be written in plain English. There have also been special funding initiatives by the National Institute of Health for health literacy research. Around 90% of research into health literacy comes from the US.
Q. It has been suggested that health literacy programs have the potential to exacerbate health inequalities if they lead to better health care for those who already are relatively well served. How might health literacy efforts be employed to help reduce health inequalities?
Almost any health intervention has the potential to increase inequalities if access and uptake is differentially poorer in those who are already disadvantaged such as those with low health literacy. Health literacy interventions have strived to improve health outcomes for those with low health literacy and have targeted their efforts on this vulnerable group. What is notable, however, is that often interventions are more effective among those with marginal health literacy and those with the lowest health literacy being very ‘hard to reach’. I think this means we need to be more creative to find ways to support consumers and patients with very low levels of health literacy. This means finding other ways beyond written communication to support understanding of health information.
Q: On a similar note, how much of the health literacy focus should be on improving systems versus addressing the issue at an individual level? Is there a risk of the health literacy debate focusing blame on individuals, rather than putting the focus on complex, unresponsive systems?
It’s true that the health literacy debate has focused on the individual too much but this is now changing with increasing emphasis on health services and systems and the level of health literacy demand they place on the consumer. The NSW Clinical Excellence Commission are now doing some interesting work in this area and there is a strong push from leading health literacy researchers such as Professor Rima Rudd from Harvard in this area (Rudd J of Health Psychology 2013). The Institute of Medicine has also published a very useful document on key attributes of a health literate organisation (Brach et al IOM 2012).
Q: Should the focus of health literacy efforts be upon improving the communications of health professionals and health organisations or upon improving the community’s health literacy? Where will we get most bang for the buck, do you think?
I think it requires a multi-pronged attack. No one strategy will provide the answer. It needs action at all levels, the organisation – making organisations more health literate, health professionals – improving communication and using simple approaches such as ‘teach back’ and among the community – developing health literacy programs for communities and schools, and for patients making health information simple and accessible. We don’t know yet where the best bang for our buck will come from but it’s unlikely that any one strategy alone will be successful.
Q: Some experts have suggested that all patients should be screened for their health literacy levels. Do you support this suggestion? Please explain why or why not? What are some of the issues (eg health service capacity etc) raised by this suggestion?
This is very controversial. First, there is no point in screening unless something is done with the results of the screen. Are there better materials, different interventions available or in place to be used for those who are identified with lower literacy? If not, don’t screen. Some researchers argue that even if good strategies are in place for adults with lower health literacy there is no point in screening since the recommendations for good clear communication are important for all patients – such as the use of ‘teach back’, and screening can cause feelings of embarrassment and shame. However, I tend to think that if there are effective strategies that can be used with people identified with lower health literacy it is worth doing – but note that it has to be done sensitively. It is also probably not worth it in areas where it’s known that health literacy will be poor such as areas with a high proportion of patients of non-English speaking backgrounds, and who are older.
Q: What is the relationship between health literacy and the social determinants of health? For eg, might the social determinants of health be a confounder in health literacy research (ie those with lower health literacy levels may also face other disadvantage affecting their health)?
Health literacy independently predicts poor health outcomes after controlling for all other known socioeconomic factors which we know influence health (Berkman Annals Internal Medicine 2011).
Q: Given that all health spending decisions have an opportunity cost, how would do you weigh up investment in improving health literacy versus addressing some of the social determinants of health or undertaking the types of reform that would create healthier environments (eg increasing access to healthy foods, reducing access to alcohol, enabling active transport)? Or to put this another way, to what extent is health literacy necessary for improving the public’s health?
Angela Coulter has a great quote:
“If people cannot obtain, process and understand basic health information they will not be able to look after themselves or make good health decisions”
Angela Coulter BMJ 2008
Q: Discussions about health literacy often take a Western-centric focus. What are some of the cultural factors that need to be considered, especially for Indigenous Australians?
The role and influence of culture is central and needs to be considered carefully alongside health literacy. Health information and services need to be accessible in terms of their literacy and numeracy demand and they need to be culturally sensitive.
Q: What are some of the gender-related issues around health literacy? Do men’s and women’s needs vary?
In developed countries women tend to demonstrate somewhat higher levels of health literacy than men. In developing countries there has been really interesting research that shows if you improve the general literacy levels of mothers, the health of the whole family can benefit.
Q: If Health Minister Peter Dutton promised you an unlimited budget to address health literacy, how would you spend it?
I would develop community health literacy programs for adults and school kids. We are currently carrying out a trial of a health literacy program through TAFE in NSW among disadvantaged adults, which from the pilot shows great potential. This kind of program could be rolled out nationally relatively easily and has the potential to provide both improved health and education outcomes. Health professionals need more training and access to suitable materials for patients. I would spend money on making health organisations more health literate following the models put forward in the US by Rima Rudd and the Institute of Medicine.
Q: And finally, what do you expect will be the most controversial or contentious issues up for discussion at the conference?
I think the most contentious issue is why we are not doing more about this major problem in Australia.
• Registration for the conference closes on November 10.
Previous reading at Croakey on heath literacy