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The health literacy journey: the impact on patients

Katie Wise is a Knowledge Specialist at Berkshire Healthcare NHS Foundation Trust and the Health Sector ILG representative.

As a health librarian, whenever I interact with clinicians as a patient, I keep an eye on how well they communicate with me and think about what advice I would give them if I was training them in Health Literacy, which is about communicating health information clearly and understanding it correctly (Osborne, 2013).

Recently I had a phone call with a Physician Associate about a suspected new diagnosis and they did a decent job in speaking in plain language, explaining the next steps and giving me plenty of time for questions. However, they could have improved by using “Teach Back”, a technique that can be used to check that I understood the instructions going forwards.

A few days later, I received an electronic letter from the Physician Associate to my GP detailing what we talked about. As I’ve worked in health libraries for four years now, I have a fair bit of knowledge of medical terminology, but this letter was like reading a different language. After the phone call I had felt calm, not worried or panicked. But confronted with pages of complex terminology, I felt confused – was this what we had talked about? Was it more serious than I thought?

This highlighted for me the journey and impact that patients experience when they either have low health literacy skills or interact with a system that is not built to consider health literacy.

Step 1: The phone appointment

During the appointment, the clinician must make sure that they are communicating the information in a straightforward way. Whilst phone appointments offer benefits in lots of ways, they do make it harder for clinicians to informally assess the patient’s level of literacy and limit how the clinician can offer information. Usual advice like drawing pictures or demonstrating using their own body, offering written or visual information to complement, and using body language are restricted and if the patient has any hearing problems or is in a busy, loud environment, communication is restricted even more (Silverman, 2005).

“Teach Back” and “Chunk and Check” are two techniques that work for any type of appointment (face to face, video, phone call) as they include verbally breaking down large amounts of information and checking for understanding through asking questions and getting the patient to teach it back.

Using plain language (not using jargon or specialist medical terms) is another key part that can be used for any type of appointment (Patient Information Forum, 2024). Whilst using jargon is a way of showing our expertise, many people may feel ashamed to admit that they don’t understand what certain medical terms mean.

Step 2: Communicating health information.

If the clinician is doing a good job of clearly communicating the information, they should be using plain language, pausing between sections to allow time for you to absorb the information, breaking down large amounts of information or instructions (Chunk and Check), checking that you understand what they have explained (Teach Back) and giving you time for questions.

However, even if the clinician has done a good job at communicating, you may still leave your appointment feeling overwhelmed, anxious, or instantly forget at least 50% of what they have told you (Kessels, 2003). This is because our health literacy levels fluctuate especially when we receive bad news or are stressed, anxious or scared. To help mitigate this loss of information, a follow-up letter or email to the patient recapping what was discussed in the appointment can be useful. The patient can refer to this when they need to and can even send it to friends or family members if they struggle to explain
what was said at their appointment.

Step 3: The follow-up letter.

For me, this is where the system doesn’t consider health literacy. It is standard for appointments at clinics, hospitals or outpatients to send a letter to the patient’s GP to communicate what was discussed and any follow-up actions that the clinic, patient or the GP may need to do. The patient is copied into this letter either by post or email which has its benefits.

But if the clinician has written it with the GP in mind, not the patient, they are likely to use medical jargon and complex instructions. The impact that this has on the patient receiving it can make them feel confused (“Is that what they said?”), worried (“It sounds more serious than I thought”) and nervous about how to share this with loved ones (“They won’t understand what this means and I can’t explain it to them”).

Some clinicians will take into consideration the fact that this is also read by the patient and will write it in a similar way to how they discussed it in the appointment which can be more reassuring to patients. Having a step-by-step action plan at the end is useful for patients to understand exactly what will be happening or what they need to do, e.g. “1. Patient to book a follow up blood test to take place in two weeks. 2. GP to book another appointment for November.” These actions should be clear on timings to reduce ambiguity – e.g. the blood test to happen in two weeks, not wait two weeks before booking it.

What does this mean for information professionals?

Understanding the experience of patients, the way the system works in relation to communication of health information, and how any disconnection impacts patients, can help us as teachers of health literacy. Being both an information professional and a patient gives me an advantageous position to notice systematic or procedural aspects that affect health literacy and to recommend improvements.

Based on a previous experience, I already include an exercise in my health literacy teaching to get healthcare staff to appraise an appointment letter, what issues they notice (e.g. urgent instructions are on page 2 and may get missed) and how they would make this clearer to patients who have low health literacy skills.

I will now include in my teaching an explanation of how any follow up written information may also be sent to patients and the impact that can have. My suggestion based on this experience would be to include a summary for the patient at the top of the follow up letter to the GP, written in plain language and including a clear step-by-step action plan, but I look
forward to seeing what ideas our clinicians come up with.

References:

Kessels, Roy (2003) ‘Patients’ memory for medical information’. Journal of the Royal Society of Medicine. 96 (5) pp. 219-222.
Osborne, Helen (2013) Health Literacy From A-Z: Practical ways to communicate your health message, 2nd Edition, Burlington, MA: Jones and Bartlett Learning.
Patient Information Forum (2024) ‘Using plain language in health information – a quick guide’. Available at: https://pifonline.org.uk/resources/how-to-guides/using-plain-language-in-health-information/ [Accessed 17 June 2024].
Silverman, Jonathan; Kurtz, Suzanne and Draper, Juliet (2005) Skills for communicating with patients, 2nd Edition, Abingdon, Oxon: Radcliffe Publishing Ltd.

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