As a volunteer UNOS Ambassador, I was excited to participate in a focus group this week on using plain language in proposals about how lifesaving organs are allocated in this country. UNOS (the organization that manages the organ transplant waiting lists) is proposing changes to the current distribution system [https://optn.transplant.hrsa.gov/governance/public-comment/].
It’s seeking public comment from people who could be affected by these changes, such as patients and their loved ones. I naturally jumped at the opportunity to combine my interest and skills as an editor (I’ve even taken workshops in plain language) and as a kidney donation advocate to advise the group on plain language–in other words, plain English.
Kudos to UNOS for creating the focus group. When an organization whose mission affects the lives of so many people (113,000 people in this country are on waiting lists for organs) considers an important change in policy, of course you want to be sure that people understand it well enough to offer valuable feedback.
I couldn’t help wondering, though, why plain language skills and training weren’t an integral part of that organization and others like it. When I was an editor at RTI International, a major nonprofit research institute, we often worked on materials for federal agencies with just this goal in mind. That’s why I and many of my colleagues had had training in it.
Reviewing the documents on which UNOS was seeking public comment, I was painfully aware of how often health-related materials leave users/readers confused or overwhelmed—often both. Out of curiosity, I checked the reading level of much of the overview section, and it was 12.3—that’s a high school senior. Thousands of the patients on the wait lists, many of whom live in poverty, lack the education to understand this information. For example, replacing phrases like “equitable access to transplant” with “the way that kidneys are distributed needs to be fairer” would go a long way toward making it all clearer.
“Health literacy” is about understanding basic health information well enough to be able to make appropriate decisions about your care and that of your loved ones. That means grasping test results, being able to follow prescription instructions, understanding your doctor’s explanations. Health care providers bear a lot of responsibility for making sure their patients understand these things, but agencies and organizations that create printed or online health materials also have a responsibility to make them easily understandable. (That’s why Betsy and I wanted to write a book on living kidney donation that’s nontechnical and uses plain English.)
Health literacy is not a question of language, although people whose native language isn’t English certainly can have a particularly difficult challenge. It’s not always a matter of life and death, but it certainly can be.
Certain health-related materials, such as informed consent for participating in procedures or studies, have legally required dense sections but should always include a simplified “What This Means to You.”
Next time you’re at your doctor’s office or pharmacy and you read or hear something you don’t understand, don’t be embarrassed about speaking up. If we don’t demand clear, easily digestible information—that is, in plain English without jargon or convoluted wording—the healthcare system will continue to offer overly complicated materials. The results can be tragic.