Some thoughts on literacy and health literacy

Disclaimer: All views are my own and not necessarily shared by my employers.

Following this tweet
@mjrobbins RT @fivethirtyeight Words like 'earthquake' and 'challenge' elitist as have 7+ letters - CNN "expert". http://bit.ly/cUfOZg

there's been a bit of discussion on Twitter about reading ability and literacy. I posted that I believed something like a fifth of adults had literacy problems but Ed Yong challenged that 'problem' isn't necessarily an appropriate category description and that it's more reasonable to view it as a young reading age and difficulty with certain technical words. Certainly I'd agree that I don't want to apply pejorative categories to people but I think there are people who have more serious difficulties with reading and comprehension, more serious than those with a low reading age.

In fact there are lots of categories of people who'll struggle to read practical information and advice about diabetes, or any health condition, including people who've not learned to read, people with dyslexia, people whose first language isn't English, people with learning difficulties etc. Even people with good reading skills may well struggle to read something if it's not written clearly.

A large proportion of our constituency are people from backgrounds who may not be equipped to access information easily - for this reason we have information in web and print formats, and in a variety of languages and alternative formats (eg audio for those with visual problems). Diabetes is more common among South Asian people where English may not be the first language so info is available in a variety of Asian languages, it's also more common among people with learning difficulties and so we have pictorial information available.

In 2004 an article on the BBC's news website reported that "Diabetes websites (are) too complicated". The analysis of several diabetes health websites included ours, although they called us the British Diabetic Association, and found that you'd need a reading age of about 15 to comprehend our site despite the fact that the average reading age was apparently nine years old.

Martin Robbins wondered if there comes a point where people communicating information can't really take responsibility for a lack in anyone's education - true enough we can't, but in our case we are 'the charity for people with diabetes' and have set ourselves the goal of getting our information to as many people with diabetes as possible.

There are plenty of people who have poor literacy though. According to the National Literacy Trust (2010) 'One in six people in the UK struggle with literacy. This means their literacy is below the level expected of an eleven year old' - that data comes from the 2003 DfES 'Skills for Life' report. The NLT also notes that 'the Leitch Review, found that more than five million adults lack functional literacy, the level needed to get by in life and at work.'

The National Patient Safety Agency (NPSA) has produced a number of booklets highlighting how the design of a variety of medical devices (including labelling) can affect how easy it is to follow instructions or understand what needs to be done http://www.nrls.npsa.nhs.uk/resources/collections/design-for-patient-safety/ - scroll down to see their suggestions for medicine labels (PDF).

Jama D and Dugdale G (2010) Literacy: State of the Nation: a picture of literacy in the UK today. National Literacy Trust.
http://www.literacytrust.org.uk/assets/0000/3816/FINAL_Literacy_State_of_the_Nation_-_30_March_2010.pdf

This may also be of interest:
Paasche-Orlow MK, Parker Rm, Gazmarian JA et al (2005) The prevalence of limited health literacy. Journal of General Internal Medicine 19: 1228-1239.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1490053/pdf/jgi_40245.pdf

See also

• National Forum on Information Literacy (US) http://www.infolit.org/index.html
• Patient Information Literacy (UK) http://www.informationliteracy.org.uk/Resources_By_Theme/Patient_il.aspx
• CILIP CSG Information Literacy Group (UK) http://www.informationliteracy.org.uk/CILIP_CSG_IL.aspx - I don't think it's restricted to health
• Patient Information Forum (PIF) on health literacy http://www.pifonline.org.uk/themes/health-literacy/ (health literacy isn't the same as general literacy but it's often related).