Jonathan Berry, Personalisation & Control Specialist in NHS England’s Person Centred Care Team, provides an update on the current work being done to transform health literacy and explains why it is so important and the positive impact it can have for patients.
“Does health literacy matter?”. I am often asked this by clinicians and managers in the NHS – usually with the word ‘really’ inserted between ‘literacy’ and ‘matter’! This is often quickly followed by the “what is it?” question. So what follows attempts to answer those two questions.
I think the best definition of what healthy literacy is comes from the World Health Organisation which, in 2015, defined it as:
“The personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health.”
It acknowledges that responsibility for tackling this lies with society and health services and not just with people themselves. Implicit within the definition is the idea that it is a critical empowerment strategy to increase people’s control over their health, their ability to seek out information, and their ability to take responsibility.
So having defined health literacy we can now begin to consider whether it really matters. The short answer is yes, because recent research in England tells us that between 43% and 61% of English working age adults routinely do not understand health information. This also has a financial cost – 3% to 5% of the annual UK health budget. Compelling though this is I often find that what really grabs people’s attention is the human cost. In many years of practice in this area my colleagues and I have come across lots of real life examples of where limited health literacy has had a really serious impact on people’s life in general, and health and wellbeing in particular. What follows is just a small number of those examples:
- a lady who thought her “positive” cancer diagnosis was a good thing and couldn’t understand why she wasn’t getting better;
- a lady who sprayed her inhaler on her neck because she had been told to “spray it on her throat”. Nobody had checked whether she realised she had to open her mouth and inhale;
- a gentleman referred under the two week cancer wait process who didn’t turn up for his appointment because he didn’t know the sign for Radiology was the same as for the X Ray Department. He was too embarrassed to ask for directions;
- a group of young women who did not know where their cervix was;
- a group of young people who didn’t know where their waist was;
- a lady with diabetes who didn’t realise there was a connection between what she ate and her ability to self-manage her condition, and
- a lady who thought that her chemotherapy wouldn’t do her very much good because her IV line was on the other side of the body to where her cancer had been.
All these stories show us just how much of an impact having lower levels of health literacy could have on a person’s health. It is disempowering as well. At the moment full involvement of people in their care is significantly less than it could be. Our system provides oral and written information to patients of such complexity that it far exceeds people’s functional skills in language, literacy and numeracy, and therefore their ability to make sense of it and act on it. Information which does not meet people’s heath literacy needs is the symptom of health illiterate services.
It makes sense that improving population health literacy, together with increasing system and practitioner awareness of the challenges faced by people with lower levels of health literacy, is an absolutely vital pre-cursor to achieving all the ambitions set out in chapter two of the Five Year Forward View, and the emerging Supported Self Care programme in particular. Put simply, how can we expect someone with Type 2 Diabetes to confidently self-manage their condition when they are unaware there is a link between it and the food they are eating?
I really hope that this shows that health literacy really matters.
So what are we doing about it at NHS England? We have taken a number of short term actions. These include setting up a National Health Literacy Collaborative with membership drawn from other arm’s length bodies, government departments, representative and delivery organisations as well as the voluntary sector. An early task for this group will be to develop a national strategy for health literacy. We have also funded the development of a curated collection of health literacy resources so that practitioners looking for resources and information only have to go to one place. Finally, we are going to support some health literacy demonstrator activity which aims to test out whether improving people’s heath literacy can also enhance their ability to self-manage their long term condition.
NHS England’s Supported Self Care programme has been working hard to ensure that the language it uses is relevant, appropriate and meaningful, both for people with lived experience and for staff. This is great to see and is an example of how all services should ensure that they use language that people can make sense of. This, in turn, is particularly helpful for people with lower levels of health literacy.
Today is Fab Change Day – why not make a pledge about how you will help to support health literacy where you are, or make sure you are checking if people can actually understand and act on the information and advice you are giving them?
We are very excited about all of this, and for more information please contact me at firstname.lastname@example.org
Jonathan Berry is Personalisation & Control Specialist in NHS England’s Person Centred Care Team. He took up this post in November 2015, and leads on policy development with regard to Health Literacy and Shared Decision Making.
Prior to this Jonathan was the Director of the Community Health and Learning Foundation, a national voluntary organisation that specialises in delivering Health Literacy programmes in deprived communities. He has an extensive health background and was Executive Director for Health for five years at the national charity, ContinYou, where he project managed the development of the national Health Literacy Programme, Skilled for Health.