Published: 06/05/2004, Volume II4, No. 5904 Page 16 17
Research in the US has found a correlation between instances of preventable disease and health literacy - the ability to understand medical advice - which can also be linked with an individual's wealth. How can health be taught?
Last month, the US Institute of Medicine published a major study of 'health literacy', the term it uses to describe a patient's ability to understand medical advice they receive from any source, whether doctors, nurses, friends, books or the internet.
Most of the conclusions of this 368-page report will reinforce the conclusions that have already been reached by British healthcare policy makers and professionals who have also studied this area.
First, the IoM notes that there is a direct correlation between individuals with poor health literacy and patients admitted to hospitals or emergency wards with preventable conditions.
This also extends to care that might have been more appropriately delivered elsewhere at lower cost. The report cites the example of a Bolivian man who attended an emergency room because he was frequently suffering headaches, only to be told that it was because he needed glasses (he was charged $300 for the diagnosis).
A second correlation is noted between low levels of health literacy and an individual's position in social or educational strata. The poorer the patient is, the more they are at risk - something that is exacerbated by language barriers in a multicultural society like the US.
Similarly, those who do not graduate from high school or have reading and learning difficulties also tend to suffer poorer health.
These demographic and educational factors can often, of course, go hand-in-hand. The IoM notes that a combination of the poverty trap and poor education is largely responsible for 90 million Americans having difficulty in understanding health information.
Three other overarching points can be made briefly. First, the problem is growing as health systems seek to transfer more responsibility to, and solicit more 'choice' from, the patient; second, the treatment of chronic conditions is particularly affected by poor health literacy; and, finally, the US is not alone in facing this problem - most other industrialised nationals exhibit a similar trend.
In the UK, Health Development Agency chief executive Paul Streets notes: 'The IoM obviously hit on a lot of the same issues and conclusions as the Wanless report did in the UK. The idea of concordance and achieving that is in there.
'I think that it is now accepted that the type of reform we want requires very good health literacy, ' he adds. 'It is already clear that in the UK, health literacy is very poor at many levels.'
Mr Streets explains further:
'Because Wanless is underpinned by an economic case, you can already say there is an understanding [of its importance] within government and within the NHS. For example, like the Americans, we can see the healthcare and economic time bomb that is diabetes, so the need to have more informed patients so you can transfer some of the responsibility for care is broadly accepted.'
Indeed, there are schemes in the UK, such as the expert patient programme, whose pilot projects have been successful in spreading literacy across all ages (news, page 5, 29 April). A similar scheme is a keystone in the IoM action plan proposed for the US. Another US proposal - the inclusion of more health education in the school system - is also already moving forward in the UK.
Confederation of Education Service Managers chief executive Chris Waterman believes the UK is making better progress. 'We have already seen a whole group of people within the health education field transferred across from Department of Health to Department for Education and Skills.We also have the new Children Bill, ' he says. 'That is largely about delivery of social service care, but if we can use it to integrate these issues of social services, child health and education on a broader base, we could really improve things.'
Other aspects of the IoM plan include the need to develop and benchmark health literacy standards and an awareness of delivering information in a multicultural setting.
Despite fundamental structural differences between the US and UK healthcare systems, the IoM also places responsibility for the delivery of better healthcare in the monolithic hands of the federal government.A corresponding UK tick list would therefore suggest that the NHS is ahead of the game.
However, implementation can prove another matter.Mr Streets and Mr Waterman - both of whose organisations have health education strategies aimed at primary and secondary schools - admit that there is still much to do.
It is one thing to teach health in the classroom, but what if immediately outside there is a soft drinks machine rather than a water fountain? Those in government also seem to have an often hazy understanding of such paradoxes.
Mr Waterman remembers debating the issue with a 'market forces' led politician.
'He said, 'Well why do not we just put fruit in the vending machines along with the chocolate?'He didn't much care for it when I pointed out that the machine owner wouldn't really appreciate refilling a machine empty of crisps and chocolate, but full of rotting apples, 'Mr Waterman recalls.
Similarly, the timescale over which health literacy improvements might truly become evident is lengthy. 'Peer information is important, ' says Mr Streets. 'If you can educate children, then they do take that knowledge back home immediately. For example, if you give them a banana at school and the kids like them, they might ask for more fruit at home. So you have had a pretty immediate impact on the whole family's diet.
'But, you are looking at something where you will not see much of the benefit until maybe 15 or so years down the line.'
So does the UK deserve a pat on the back? Perhaps. But there is one nasty surprise in the IoM report, a conclusion drawn from its research that has caught some experts in Britain unaware.
It is perhaps best illustrated by reproducing a letter encountered by US researchers:
'I read on a college level. Yet, I am a total health illiterate. I have been diagnosed with an unusual type of autoimmune disease that has extended into several other diseases, one of which - lymphoma - might be fatal. Yet ... despite my ability to understand the written word at a high-grade level, and the many resources at my immediate disposal, I still do not understand everything that I need to know about my condition.
'I am writing this to share with you that it is difficult to piece together all the various components of the healthcare system even when you have a knowledgeable support system and excellent reading ability.'
The author introduces herself by noting: 'I am a nurse with advanced degrees'.
The nurse's letter is not an aberration. IoM research suggests that virtually all patients will have significant difficulty in understanding health information at some point.
'A person who has finished high school and knows how to read may still not be able to navigate the health system, ' its report says.
Mr Streets argues that the health literacy problems faced by those at the foot of the ladder remain the greatest threat to regaining control over the healthcare system, not to mention delivering equitable service.
He is almost certainly right, but he also acknowledges that the breadth of the problem suggested by this aspect of the US research came as a surprise.
'We have believed that the better educated tend to be more in control, ' he says.
If the US experience can also be extended to other countries, the IoM's findings may have gone much further than simply confirming UK beliefs.
The agenda may have gained a whole new critical item - and one that, in many respects, is difficult to quantify. Perhaps the backslapping had better wait.
Health Literacy: a prescription to end confusion.
National Academies Press. www. nap. edu
Paul Dempsey is HSJ's US correspondent.