Health literacy can be a matter of life or death

Health literacy can be a matter of life or death

reposted from https://theconversation.com/profiles/keegan-shepard-310214

By Keegan Shepard, Edge Hill University

The basic ability to read is essential in looking after one’s health, especially when managing a chronic illness that requires various treatments and medications. It is estimated that patients with low health literacy cost anywhere from US $106 billion to $238 billion each year in the US alone, which equates to roughly 10% of the healthcare budget. In the UK, it’s estimated that the financial cost of low health literacy is 3% to 5% of the yearly NHS budget.

Health literacy is defined as the degree to which a person has the capacity to obtain, process and comprehend health information in order to make decisions about their own health. Around 75% of health information is written at a high school to undergraduate reading level.

This presents serious problems – take the US for example, where the average reading ability of adults is between grade 8 and 9, with around a quarter of adults reading at a grade 5 level and below. In England, the current research shows that approximately 43% to 61% of English working age adults regularly experience problems understanding health information.

As a result, most healthcare information is written at a level more advanced than the reader’s ability. Imagine the anxiety caused by not understanding what your doctor has said, or by being puzzled by your prescription, all with the knowledge that your health is at stake. Or if you’re a parent and making the health decisions for your child, that you could end up making a mistake that puts them at risk.



Hospitals and other healthcare facilities can be stressful, daunting places. They’re often very busy with a distracting amount of information that all demand your attention. The health literacy standards of these environments are often mismatched with the health literacy levels of the patients using them, especially when it comes to signage. A problem faced by participants in one study was that the clinic they were looking for was given three distinct names: one in their appointment letter, one in the hospital directory and a different one again in the signposts.

When navigating a healthcare facility, a patient is expected to be able to read and understand a wide range of written information, from appointment letters to complex consent and medical history forms to information pamphlets and maps. Many patients are unable to make sense of these sources of information, leading to late or missed appointments, dissatisfaction with the facility and, in the worst case, a decision to end their treatment.

The problem of jargon

We all come across jargon in the workplace, probably on a daily basis. Yet the use of jargon by doctors and other medical staff can be troubling. It’s easy for doctors to forget that most of their patients don’t have the same education, training and years of experience that they do, and that the complex terms they’re familiar with might sound like a foreign language to others. A patient being told that they have “renal adenoma” or “a benign kidney tumor” can be misunderstood, causing them pointless worry. A less extreme example would be using “hypertension” in the place of “high blood pressure” when the latter is more commonly understood.

Patients with low levels of health literacy are more likely to make mistakes with their medication and often misread the instructions. Instructions such as “take two pills twice a day” can be misread, with research showing that fewer mistakes were made if phrased take two pills with breakfast and two pills with dinner”. Most research in this area found that around half of patients were recorded as misunderstanding their medication’s purpose, the frequency taken, or the specific dosage instructions involved. Errors with medication can be very dangerous for patients, even life threatening in some cases.

The concept of health literacy was first introduced in the 1970s, so it’s still a fairly new field of research, but it has been gaining traction in recent years. It’s hoped that future research will highlight this as a significant area of concern, instigating the changes necessary to accommodate those with low health literacy.

This article was originally published on https://theconversation.com/health-literacy-can-be-a-matter-of-life-or-death-67469

https://health.gov/communication/literacy/quickguide/factsbasic.html
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What if the NHS routinely used patient accessible language?

What if the NHS routinely used patient accessible language?

Why does the NHS routinely use medical language such as ‘Renal’ rather than ‘Kidneys’, and ‘Radiology’ rather than ‘X-ray’ in patient facing areas? 

What is in a name? Would an otolaryngologist by any other name still be able to treat your sense of smell? 

Making Health care professionals’ roles and the names of services easier to understand, remember and pronounce would aid patients in understanding and navigating the services they are using, help them to discuss their care, and may result in fewer missed appointments.

As a non-clinical NHS staff member and a fairly health-literate patient, I see the NHS as confusing and difficult to negotiate, and I wish that someone would translate it all into non-clinical language for me. Given the profusion of patient leaflets, websites, and books designed to help explain it all, it seems I am not alone in this. Recently I had a hospital appointment but the department I needed was not marked on the map, and the signs didn’t help me. I noticed in passing that there was a small sign for the phlebotomy department, and it made me wonder how many people wander around hospitals getting lost and are late for appointments, and how much the complicated names of the departments and services make this worse? What is it like for people who have difficulty reading or communicating?

The NHS wants patients to be engaged with their health, actively involved in healthy lifestyles or self-care and to work in partnership with their Health Care Professionals to enable Shared Decision Making “No decision about me without me”, however the language routinely used in healthcare services does not support this.

The 2014 WHO report¹ on health literacy shows that an inability to understand health information results in less healthy choices, riskier behaviour, poorer health, less self-management and more hospitalization.

A report by Rudd² assessing US healthcare environments described them as having a high literacy demand, and a recent report from an RCGP-led health literacy workshop³ included a call for “clear signage avoiding jargon and using lay terms whenever possible, for example ‘heart section’ rather than ‘cardiology department’”. The RCCG report included this personal communication from a GP: 

A patient referred for a chest X-ray didn’t have it done because he walked round the hospital and couldn’t find the department because the sign read ‘Radiology’. He was too embarrassed to ask for directions.

Instead of making leaflets or a website to explain the difficult language, why not change the language? Is there any benefit to holding onto the medical terminology when naming services?

There have been recent NHS standards⁴ on accessible information published, which state that they should show respect, understanding and accessibility: “due to the complex subjects we deal with, the words we use need to be as simple and accessible as possible. This means they need to be: free of jargon; free of acronyms; and free of overly technical language.” However we know that the NHS printed health information currently in circulation is written at too complex a level for 43% of working age adults (16-65 years).⁵

NHS Patients in England should now be able to request access to their GP medical records online, but how many patients are able to understand them? Hospitals often give out discharge summaries to patients full of abbreviations, medical terms and short-hand. What is the point of this if the patient or family or carers can’t decipher them?

So what would the NHS look like if made easy to understand for non-clinicians?

When we are invited to an appointment it would be obvious from the letter sent what it is for, and what it will entail. The signs and maps will use the same easy to understand names for the departments to help us get there.

In the consultation we will be told about any results, tests required and what will happen next in the same way as usual, but patients would then get any further follow up appointments for tests or clinics using the same language, or will have a patient-friendly summary included.

When we have to go for a blood test we will not need to know that it is the phlebotomy department we need to find – it will be called something straightforward like blood tests.

We will be told who we will see, and what they do, requiring no prior knowledge such as why some doctors are called Mr or Miss, and it will be made clear that if the clinic is covered by different staff that we might see someone different next time, and we will be given information including their names after each consultation in case we need it to ask a question or complain.

If we use other services we will be able to tell them about the problems or treatments we have had in our own words, rather than trying to remember and say the technical terms, and this will be perfectly fine.

What difference will this make?

• Patients (including me) might find it easier to understand what appointments are for and be better prepared for them.
• We might be more likely to be able to communicate details of our medical history to others who need to know e.g. ambulance staff.
• We might be more able to get information or support for our problems, and feel more able to discuss them.
• We might feel more able to ask questions if we don’t understand something.
• We might be more able to understand our medical notes and more likely to access them, perhaps even collaborate by providing information e.g. blood sugar level monitoring.
• We might feel more able to point out errors in medical records and avoid mistakes.
• We might be able to look after ourselves or others better.
• We might be more likely to become active participants in our health and care and have better health outcomes.
• Additional benefits could be that non-clinical health and care staff (like me) will find it easier to negotiate the system too, and there may be particular benefits to certain groups who have difficulty with complex terminology such as those with communication problems, dyslexia, or learning difficulties.

I also fondly imagine the discussion and training required to implement these changes may also result in more of a focus on inclusion, and improved communication between Healthcare Professionals and patients overall.

Importantly I think that these changes would send the message that the NHS is run for the benefit of the patients rather than the staff, and signal that patients are equal partners who are included and respected, as set out in the NHS vision:

“We want everyone to have greater control of their health and their wellbeing, and to be supported to live longer, healthier lives by high quality health and care services that are compassionate, inclusive and constantly-improving.”

1.    WHO Health literacy: The solid facts 2014

2.    R. Rudd Navigating Hospitals: Literacy barriers, Literacy Harvest 2005

3.    Health Literacy Report from an RCGP-led health literacy workshop June 2014

4.    SCCI1605 Accessible Information – the ‘Accessible Information Standard’ 2015

5.    Department for Business Innovation and Skills. The 2011 Skills for Life Survey: a survey of literacy, numeracy and ICT levels in England. BIS research paper number 81. London: DBIS, 2012

     Zoe Ashton

Submitted to the Kings fund "the NHS if" competition November 2016