Health literacy: 6 tips to help convert clinician-speak into consultation documents
The Consultation Institute has written many articles about the need to abolish jargon in consultation. Mind Your Language, published in September 2019 provides a handy prelude to the Institute’s chapter on Health in The Politics of Consultation with the not entirely tongue-in-cheek sentence, “Please ensure you have a recent Abbreviation Vaccination Certificate (AVC) in order to make sense of this chapter.”
The second of the four Gunning Principles, the legal framework that sets out the fundamental requirements for fairness in public consultation, Gunning Principle Two places an obligation on consultors to provide sufficient information as to enable consultees to give proposals ‘intelligent consideration.’ Of course, this means they must be able to understand the information presented or explained to them and requires excellent communication skills by consultors.
The Institute has developed a consultation charter to define seven best practice standards and assist consultors in adhering to those standards. Consultation Charter, Principle 3. The ACCESSIBILITY of Consultation sets the standard that consultees ‘must be able to have reasonable access to the exercise’. This means that the methods chosen must be appropriate for the intended audience and that effective means are used to cater to the special needs of ‘seldom heard’ groups and others with special requirements. But how much attention gets paid to low levels of health literacy being a special requirement?
We can all relate to feeling a little bamboozled by the mortgage advisor when we are reviewing our options to renew payment arrangements for the single largest purchase that we ever make and secure the place we call home. This reflects our level of financial literacy. How on earth a first-time buyer unscrambles a loan to value, compound annual interest rate or a lifetime ISA beats me. Similarly, we have all called an IT help desk to be quizzed about whether we have cleared our cache lately or undertaken a defrag on the ROM. IT literacy levels amongst some in my household are certainly dubious.
Similarly, we all have a level of health literacy. We all know that high blood pressure caused by water retention is not a good thing but to be told in a clinical consultation that you need a thiazide diuretic to reduce hypertension would be beyond most of the reasonably well-educated population.
Much importance is placed upon supporting consultation participants with BSL interpreters, easy-read documents and the use of plain language, but how much consideration do consultors really give to health literacy levels?
Health Literacy Explained
The World Health Organisation (WHO) defines health literacy 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”.
There is, of course, an irony here that this is not the most simple statement we have read today!
What research tells us, is that low health literacy is associated with lower levels of health, higher risk of long-term conditions, more difficulty managing conditions, and, in older people, higher mortality. Studies have explored the extent to which the level of literacy and numeracy required to understand and use health information in England matched the literacy and numeracy skills of the population. A significant proportion of the population do not have the skills to fully understand and use the health information materials provided to them.
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 is wasted on avoidable repeat appointments, hospital admissions and poor medicine taking compliance to give a few examples of the cost implications.
In terms of a patient understanding their medical condition and therefore managing it effectively, the impact of not paying attention to health literacy is clear and can be demonstrated in these 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”;
- a group of young women who did not know where their cervix was;
- a group of students on a first aid course who did not know that their stomach was their abdomen;
- 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 real stories show us just how much of an impact having lower levels of health literacy could have on a person’s health and indeed, their self-confidence and mental wellbeing.
Health Literacy in Consultation
Many people have difficulty distilling information without taking it literally:-
How many women have seen clearly displayed on a sign on a tampon machine
“Insert two x £1 coins”
This is neither absorbent nor comfortable!
A friend of mine recently recounted a GP consultation:-
Doctor: “You will need to take these tablets, two on Monday, two on Tuesday then one every other day……..!”
Patient: “Is that one on Wednesday and Friday or every other day that week?”
So, how does this translate into clear and simple consultation documents?
A small focus group which included my 74 year old mother and her curly-haired pals revealed that they thought “acute” meant serious or in their words “really painful”. The term “acute service provider” left them confused until I said “hospital.” But further probing revealed that “chronic” also meant serious or really, really painful to them….
“Primary care”, didn’t resonate with them until I explained that it meant GP services but also some other things like advanced health practitioners (a term also lost on them) and then we talked about community-based services, which they told me they thought GPs were. It was like a game of health term bingo!
I then tested to see what they knew to be the difference between peri, pre, post and anti-natal.
“ooh well that’s all been such a long time since we had children and it wasn’t like that on our day” was the response.
So, how can we practically scope a public involvement exercise about hospital, community or maternity services unless we are clear about what we mean?
Communication and consultation documents, websites, social media posts and the like should all cater to health literacy levels. I recall hearing a presentation given by Professor Joanne Protheroe, Chair of Health Literacy UK, GP and Director of Integrated Clinical Academic training at Keele University who told a story about a gentleman referred under the two week cancer wait process who didn’t turn up for his X-Ray appointment because he didn’t know that the sign for Radiology meant the X-Ray Department. He was too embarrassed to ask for directions.
The Reasonable reader test has been tested in court and is best highlighted recently in Claire Stephenson v Secretary of State for Housing and Communities and Local Government.
Mr Justice Dove agreed with Talk Fracking and declared the consultation unlawful, invoking the concept of ‘the reasonable reader’, and what such a person might infer about what they were being asked in the consultation questions.
On 15 March 2019, tCI wrote about the judgment handed down by Mr Justice Dove. The Briefing Note’s conclusion was five-fold: about scope; the need for care in reviewing consultation documents; the need for care in consulting when it involves information produced by others; about the importance of considering the ‘reasonable reader’ test; and about the need for meticulous data analysis and reporting.
Tips for catering to low health literacy
On 20 September 2019, tCI’s founder, Director Rhion Jones published a critique of the documentation published to support a consultation on proposals for changes to services at the Friarage Hospital. There was a lot to learn from the documentation and the points the consultor could address in the consultation process. The opinion piece suggested that ‘It uses too much jargon. What are readers expected to make of phrases like ‘robust repatriation protocols’ ‘ambulatory care’, a ‘documented ceiling or care’, ‘initial differential diagnoses’ or patients will be ‘risk-stratified’.
So, to revisit Gunning Principle Two, consultees have a right to understand what is being proposed and what is being asked of them. Here are a few simple tips to help convert clinician-speak into consultation documents whilst taking account of health literacy.
- Adhere to the Accessible Information Standard
From 1st August 2016 onwards, all organisations that provide NHS care or publicly funded adult social care are legally required to follow the Accessible Information Standard. The Standard sets out a specific, consistent approach to identifying, recording, flagging, sharing and meeting the information and communication support needs of patients, service users, carers and parents with a disability, impairment or sensory loss.
- Introduce robust checks and balances
Test consultation documents with a representative reader group which includes people with low levels of health literacy.
- Clear Documents
Often referred to as “easy read” documents should be developed with groups of people who use them. A precis document with incorporated spurious clip art can be just as difficult to understand if not carefully crafted. Or even better, commission local voluntary sector support groups to develop them for you.
- A picture says a thousand words
Diagrams, infographics and animations are much easier to understand than reams of complex narrative.
- Include a glossary
Most consultors include a glossary of acronyms in their documentation, but an explanation of what those terms mean is often absent.
- Use plain language
Words with fewer syllables and non-complex sentence construction can significantly help. Online readability calculators can prove helpful such as SMOG (Simple Measure of Gobbledegook Calculator). https://readabilityformulas.com/smog-readability-formula.php
This document scored as ‘difficult to read’ which entirely proves the point!
The Consultation Institute Mind Your Language
The Consultation Institute The Politics of Consultation
The Consultation Charter: A foundation course in consultation
Health Literacy UK Resource Library
NHS England: Accessible Information Standard
NHS England National Health Literacy Toolkit
Public Health England and the Institute of Health Equity: Improving health literacy to reduce health inequalities.