From filling out an insurance form to interpreting nutrition labels, a patient’s understanding of what they’re reading and ability to use that information to make decisions regarding their health can affect every part of that patient’s health journey. Patients with low health literacy experience worse health outcomes, poor management of chronic conditions, increased healthcare costs, and higher hospital admission rates. Yet surveys show that 88% of US adults do not have the health literacy skills needed to manage all the demands of the current health care system.
Consider how the inability to understand prescription labels and corresponding medication misuse is the cause of 3.6 million hospital visits, 700,000 ER visits, and 117,000 hospitalizations annually due to injuries related to adverse drug events, according to the Wisconsin Health Literacy project. The project’s founders further report that 46% of patients misunderstand one or more dosing instructions on prescription labels, while 56% have misunderstood one or more auxiliary warnings.
For years, the US Department of Health and Human Services has identified health literacy as an essential national priority to improve health and well-being, but in its “Healthy People 2030” initiative, the issue was infused with important new perspectives. The program defines both:
- Personal health literacy – the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
- Organizational health literacy – the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
The new definitions differ from earlier iterations by emphasizing people’s ability to use health information rather than just understand, to make well-informed decisions. Most notable is the double-pronged approach, which bases the concept not just on individual capabilities but on the responsibility of organizations to make health-related information equitable, accessible, and comprehensible to every patient.
Underlying all is the inextricable connection of limited health literacy, which is more common among racial and ethnic minorities and those with less economic stability, to health inequity. Health literacy is essential in an era of sophisticated technology used for patient communications, disease management, and advanced treatments. As the lead author of a recent study in Circulation concluded, “If we don’t address health literacy, these advances won’t benefit many of the people who have the greatest need.”
The increased emphasis on promoting personal and organizational health literacy as defined above by “Healthy People 2030” couldn’t be timelier for patients with rare diseases. The need to understand and benefit from healthcare communications makes a difference from the start – finding the correct diagnosis – and continues through identifying the best care, reaching out for support from other families and non-profit organizations, and seeking entry into clinical trials. A recent article in medium.com accurately portrays the fragmented nature of information for those with rare diseases, encouraging the enhancement of international expertise networks, biobanks, and patient registries with this resonant statement: “In a life-threatening disease, for which a cure is not yet discovered, knowledge about the most promising treatments and how to access them can be determinant for a patient’s life.”
The Utilization Review Accreditation Commission (URAC), Accreditation Commission for Health Care (ACHC), The Joint Commission, and National Association of Boards of Pharmacy all recognize health literacy as a requirement for accreditation. In its newest set of standards for patient empowerment, URAC guidelines include that:
- Patient materials must be written in plain language (writing designed to ensure the defined reader understands it quickly and easily).
- Staff is to be trained with relevant information and guidance related to the topic.
- Services accommodate a diversity of patients with linguistic or cultural differences, cognitive impairments, or physical impairments.
Heather Bonome, URAC Director of Pharmacy, recently told Pharmacy Purchasing & Products Magazine: “All patients must receive the information they need.”
Taking Action
The key is identifying the reading level of your intended audience and ensuring the information is written at that level. For most patients in the US, that means focusing on an average 6th – 8th-grade reading level and using jargon-free, easily comprehensible writing, as illustrated in this real-world re-dos:
Before: The Dietary Guidelines for Americans recommends a half hour or more of moderate physical activity on most days, preferably every day. The activity can include brisk walking, calisthenics, home care, gardening, moderate sports exercise, and dancing.
After: Do at least 30 minutes of exercise, like brisk walking, most days of the week.
Before: Title I of the CARE Act creates a program of formula and supplemental competitive grants to help metropolitan areas with 2,000 or more reported AIDS cases meet the emergency care needs of low-income HIV patients. Title II of the Ryan White Act provides formula grants to States and territories for the operation of HIV service consortia in the localities most affected by the epidemic, provision of home and community-based care, the continuation of insurance coverage for persons with HIV infection, and treatments that prolong life and prevent serious deterioration of health. Up to 10 percent of the funds for this program can be used to support Special Projects of National Significance.
After: Low income people living with HIV/AIDS gain, literally, years, through the advanced drug treatments and ongoing care supported by HRSA’s Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.
An impressive array of resources, from toolkits to readability tests, is available to help ensure healthcare communications written for patients are as clear and easy to read as the examples above. These include:
- Agency for Healthcare Research and Quality toolkit
- Healthcare Education Association guidelines
- Online readability tools, including the SMOG Index, the Fog Scale, and the Flesch Reading Ease Readability Formula
- Everyday Words for Public Health Communication
Use this quick checklist when writing patient materials in
plain lay language:
- Identify who your readers are; who’s the main target of your work? What’s their reading level?
- Write for the average reader using common, everyday words, but avoid slang.
- Use a conversational tone instead of a more formal, bureaucratic one.
- Avoid undefined technical terms.
- Use personal pronouns such as “you.”
- Use positive rather than negative words.
- Avoid long strings of nouns.
- Use “must” to express requirements instead of the ambiguous word “shall.”
- Use the active voice versus passive voice.
- Use action verbs
- Use the simplest tense possible; the simple present is best.
- Be direct, omit unnecessary details and avoid excess words.
- Start with an introduction and a table of contents to help readers understand how it’s organized.
- Use headings to guide readers; the question-and-answer format is very helpful, and you can organize information to answer these questions.
- Use words with fewer syllables and short paragraphs and sentences (average 15-20 words), and each paragraph should have only one topic.
- Use transitions to connect ideas, sentences, and paragraphs
At Orsini Specialty Pharmacy, we strive to engage, educate and empower patients to participate meaningfully in their care. We help ensure this occurs from the start, with a thorough assessment by specially trained staff of the patient’s current knowledge and understanding regarding their therapy’s benefits, risks, and potential outcomes. Every patient receives therapy-specific instructions and an Orsini Patient Handbook created with adherence to health literacy standards – using plain language and written to a 5th to 8th-grade reading level. Pharmacy staff reference these materials with our patients and provide opportunities for questions and discussions. Ongoing assessments are conducted throughout therapy to gauge the need for additional reinforcement and education by our pharmacists on critical issues such as proper handling and storage of medication at home, dosing schedule, or detection and prevention of side effects. Additionally, our knowledgeable team supports patients in advocacy efforts by connecting them with reputable organizations and assistance programs. Contact us to learn more about our compassionate, clinical care and individualized patient treatment plans.