Writing a material patients understand first time
A patient material is understood the first time it is read when it carries one message placed where a reader who only glances will find it, keeps to what the patient needs to know, is ordered so that understanding builds, and uses words chosen and explained for a reader without medical training. It also looks easy to read and to scan, speaks in a factual and empathetic tone to a reader who may be frightened, and is reviewed by patients and caregivers while it is developed. A checklist covers the same points for a leaflet.
Accessibility and readability
Patient education accessibility is the creation of health materials designed and presented so that audiences of diverse literacy levels can understand them. Certain instructional design principles, along with strategies to enhance readability, help facilitate patient understanding and bridge gaps in health literacy.
Digital and print materials produced for the public are typically more appropriate for health care providers and students than for patients, families and caregivers, a problem that appears to be global. Health information has three main problems of accessibility: health organisations usually write leaflets and patient education materials at a high reading level, which makes them hard to read and understand; the public is divided, half of adults needing easy-to-read material and the other half preferring brief, concise information; and hospital patients are under stress and often confused, so that even skilled readers struggle to process information.
Health literacy has been an increasing focus of Mayo Clinic's patient education materials since 2004. Before then, its patient education writers tended to use the terms and phrases health care professionals used, and patients did not always understand the resulting materials. One consequence was that tests had to be rescheduled because patients had not prepared for them properly. Mayo Clinic uses plain language, defined as writing so that the reader, a patient or a family member, understands it the first time it is read. A writer for patients should think about somebody they love and whether that person will understand what has been written.
To truly engage patients, health education materials should be designed to be accessible to audiences of diverse literacy levels and learning styles. Medical writers should make creative and thoughtful instructional design decisions, and the final product should respect the humanity of patients. Meeting health literacy standards, which include language, formatting and design principles, is key, whether the writer writes directly to patients or for clinicians on behalf of patients.
Improving readability is a challenge for many clients who create patient education materials. A medical communicator without specialised training in health communication or in creating patient education can still improve the readability of materials for the public with simple tips. Most studies addressing the readability of patient materials focus on the language level of written content. Readability starts far upstream of word choice.
One message, placed prominently
Each piece should carry just one message. A single message enhances readability by helping to limit the document's length, and it lets patients and other users focus on the important information instead of having to work out what is essential. At the start of a project that includes material for the public, the writer should ask the client what the web page or information sheet is to convey and gently guide them to one answer, such as learning the benefits of a Mediterranean diet. Where the client wants several messages, the writer should ask which matter most and suggest segmenting the information; a patient education slide set, for example, can be delivered in three segments, each with its own message.
When editing for readability, the writer should strike out every detail that does not directly support the message the client wants to convey. One writer who edits for readability usually adds a constructive comment when deleting material, such as "This would be great in a separate brochure" or "What about moving this to the 'After Your Surgery' webpage?".
The message should be placed prominently, usually in the title as well as at the start, so that the audience gets it even if they only glance at the information, knows what the piece is about, and can come back to it later when they need the information or have more time. The title of a print or digital piece should be the main message in everyday language: "How to Do a Home COVID Test", not "COVID-19 Rapid Antigen Test", which is a label rather than a message. The first paragraph should also state the main message, as in "These instructions help you test for COVID-19 at home" or "This information tells you how to use your asthma inhaler". Mayo Clinic's patient education materials have a clear title.
In digital material the main message, such as "Make an appointment" or "Learn your diabetes risk", should appear immediately, and users should never need to scroll through content to discover it. Users should not be made to hunt for the main message, as newspaper readers once had to flip the paper over to read the less urgent or interesting content placed "below the fold" on the front page.
Need-to-know content
In patient education, content is often discussed in terms of distinguishing what patients need to know from what is nice to know.
The writer should help clients identify what is need-to-know, and remove what is nice to know or save it for another audience. Information is need-to-know if patients, families and caregivers can act on it; if it is not actionable, it is nice to know but not essential. A brief discussion of the sella turcica in a brochure on pituitary gland disorders was cut for that reason: it was interesting, but patients could do nothing with it. What is need-to-know varies with the audience. Some clients, for example, include information on anatomy or pharmacokinetics, but users do not usually need to understand these topics to take part in their health care.
Mayo Clinic's patient education materials focus on what patients need to know, not what would be nice for them to know. Its communications consultants determine what patients need to know by interviewing the health care professionals in a way that gets them to explain things more plainly.
Order and structure
Content should be simplified, presented impartially and organized in a logical order. Content structured so that it gradually builds understanding from the simple to the complex helps readers understand the main points and supporting details. The structure and organization of the lesson should be apparent to the patient in advance, so that the patient knows what to expect from the programme. An advance organizer provides clear orientation for readers to process the information they are about to take in, and such a map is critical for people with learning disabilities or low literacy levels.
Words and sentences
Unless writers know that their audience has a background in healthcare, it is better to assume that it has no medical field experience or understanding of biological concepts. Evaluation studies on X-Plain, the patient education materials published by the Patient Education Institute, show that users who have more experience or are highly health literate are not offended by simplified content.
Complex medical concepts should be broken down into short words and sentences. Speaking directly to the patient, using the active voice and avoiding clichés and idioms increase accessibility and reduce confusion. Mayo Clinic's patient education materials address the reader as "you" and clearly explain on the first page what is in it for the reader: why it matters to read the information and follow any instructions.
High-level words should be replaced with everyday ones. The words a writer would use in talking to a neighbour or family member make content friendlier for the public, and help the writer avoid words that many users have never seen in print. Medical communicators, as knowledge workers, see many more words, and many more complex and challenging words, than most people. Some find it easy to come up with alternatives to high-level words such as "salutogenic", and others do not, especially those accustomed to writing for health care providers.
The writer should read the draft through, printing digital content to do so if that helps, and strike through:
- words of more than three syllables
- medical, scientific, nursing and technical terms
- words used with colleagues but not with a next-door neighbour, such as "follow-up" or "resource" as a verb
- non-English words such as "in vivo" and "tamponade"
Each should then be replaced with a common English word, and consulting a thesaurus is perfectly acceptable. The substitution is seldom one for one, and one writer often revises the rest of the sentence a little to make the new word fit. Where possible, Mayo Clinic's patient education materials use plainer words, such as "breathe in" for "inhale", along with illustrations and photos, and they sometimes include patient stories.
Technical or uncommon words should be explained with definitions and examples. Information that may be new or unfamiliar to a reader can be phrased so the reader can gather clues from the context to increase comprehension. Using the same word consistently rather than synonyms can also help prevent confusion. Mayo Clinic's patient education materials use medical terms but clearly explain them, defining "hypertension" as "high blood pressure".
Punctuation and numerical values should be chosen for what is most understandable to the audience, and symbols should be used cautiously. Not all patients may recognise the ampersand, for example, while the per cent sign is more understandable and recognisable than the word "per cent".
Concrete or practical examples that illustrate a point can help further a patient's understanding and influence their behaviour: advice to increase vitamin A in the diet, for example, can name dark green leafy and deep orange vegetables, and then spinach, carrots and squash.
Sentences of 10 to 12 words help users. This is challenging for writers who spent a lot of time in school, where sentences can run into entire paragraphs. In the client drafts one editor sees, the average sentence runs to at least 20 words and often more than 40. Popular digital content shows what sentence length the public is used to. A sentence with a conjunction or semicolon can likely be split into at least two shorter ones to improve readability. Mayo Clinic's patient education materials are precise and concise, and when lengthy they are divided into sections.
Layout and appearance
Content should look easy to read, because material that looks challenging to read will be abandoned, potentially in favour of "Dr Google". The audience may have access to a great deal of attractively presented, user-friendly but inaccurate information. To assess how inviting a print piece is, one writer places it on a desk and stands over it, high enough that the words cannot be read, which gives a sense of how it looks when first handed to a user. The same writer brings digital content up on a phone, which is how most people will view it and which allows its user-friendliness to be evaluated at once. If it is harder to read or navigate than the writer's own go-to digital content, the writer should talk with the web designer about optimising it for mobile use.
The piece should look easy to scan at a glance. Big blocks of text, as in an academic journal, mean that some text needs cutting and subheads need adding. A favourite news website shows the paragraph length users are used to, usually a sentence or two. The piece should not be visually busy either: it should feel good to keep the eyes on the page, without the sensation of visually skipping around.
Visual cues draw the eye, and they serve as signposts that are especially important to readers with lower vision or less confidence in handling print or digital information. The title should be highlighted with bold type, a larger type size, a different colour or a heading such as "What You Need to Know". All capitals and underlining should be avoided, because both obscure the variations in letter shapes that help readers recognise words quickly. Subheadings should be added throughout, in coordinating but different type sizes and fonts. A strategy from sales and advertising copywriting is to make the subheads tell a story, so that read one after the other they form a coherent narrative: a handout titled "Getting Ready for Surgery" can have "Prepare the night before", "Get ready at the hospital", "Ask questions" and "Know what to expect after surgery". In a series of tips or steps, repeating the word "tip" or "step" marks the sections.
Mayo Clinic uses a larger type size for patient education materials geared toward patients with vision problems.
Tone and the patient's experience
Learning of a disease or disorder, or of the need for a procedure, can be frightening for a patient and can affect their identity. Stress, such as that caused by an illness or injury, can detrimentally affect a person's health literacy abilities.
Writers should be conscious of the patient's potential experience, while being careful not to sacrifice educational effectiveness. Keeping the patient and their potential sensitivities in mind while developing content can help increase the patient's satisfaction with the care they have received. The tone of patient education should be factual and empathetic. A judgmental or patronizing tone can impede the learning process and negatively affect the patient.
Review by patients
To ensure that educational programmes are accepted and understood by the target audience, patients should be involved in reviewing the materials during development. Patient involvement and review increase accessibility and the likelihood of success once the materials are in use. Direct online feedback from real patients in clinical settings simplifies collecting and analysing patient feedback; one example is an online feedback form for the Arabic-language version of the X-Plain materials.
To make sure a redesigned leaflet meets patients' needs, it should be tested with patients and caregivers. The final version should include their suggestions and recommendations, because patient feedback, often overlooked in leaflet design, enhances engagement and adherence in practice.
A six-point checklist for a leaflet
A writer creating a patient information leaflet should follow a six-point checklist:
- Patient-focused content. Speak directly to the patient as "you", address the patient's needs and actions, and keep the content simple and essential.
- Clear and simple language. Use plain language, explain or avoid medical terms, and write short, easy-to-read sentences aimed at a sixth-grade reading level.
- Visual design. Keep the layout clean and uncluttered with clear headings and bullet points, prefer readable fonts, and add helpful images or diagrams.
- Ease of following. Organise the content logically, put key points first, highlight key messages and give clear action steps, such as "what to do if…?".
- Accessibility and inclusivity. Provide accurate translations and culturally appropriate content, offer formats suitable for every kind of patient, such as large print or braille, and test readability across different literacy levels.
- Accuracy and support. Follow reliable, up-to-date guidelines, give contact information for questions, and keep terminology and messaging consistent.
In one case, a 75-year-old who had just started anticoagulants for stroke prevention was later admitted to hospital, where the team found non-compliance caused mainly by a lack of education and support when the medicine was dispensed. No verbal counselling or supplementary guidance was given when the patient collected the medicine, so the patient did not know the critical risks of missed doses or overdose. The patient information leaflet included with the medicine was written in heavy, technical language that left him confused and afraid. The standard leaflet failed to give him comprehensive and clear information. The original leaflet was neither clear nor patient-friendly, so it needed a complete redesign. To make such a leaflet easier to understand, technical terms should be replaced with plain language, visual aids added, such as diagrams for missed doses, adverse events and emergency actions, and important instructions clarified, including a "What to do if…" section for common scenarios. Once the patient had a leaflet built to the six-point checklist, his adherence to and compliance with the anticoagulant treatment improved, he felt more confident and better prepared to manage problems, and he reported no adverse drug events at the six-month follow-up.
The medical writer's role
Among the ways medical writers contribute to risk mitigation are using plain language principles and visual aids to enhance patients' comprehension, partnering with literacy organisations so materials meet accessibility standards, and advocating for patient feedback to be incorporated so education materials are personalised, reliable and effective. Collaboration between medical writers and healthcare providers is needed to develop high-quality materials tailored to patients of diverse literacy levels and to prioritise feedback loops with patients that keep improving the content.