My grandson was up to bat in his first little league game. I shouted enthusiastically from the stands, “Eye on the ball, Rhett. Eye on the ball!” He stepped out of the box, lowered the bat, and replied in a low bored voice with all the power of a stage whisper, “ I already know that. You don’t need to tell me.” Now I know how he felt.
A headline flashed on my screen this morning “Information materials… too complex for patients". We know that. For sure. For certain. No doubt. No question. A PubMed search on “readability of patient information” brings up 2149 published articles; 45 already in 2015, one every work day.
The continued focus on patients’ inability to understand information from healthcare providers and insurers is not just wasteful, it’s harmful in several ways.
Readability is the low hanging fruit of health literacy research. It’s picked. There are so many urgent unanswered questions to investigate. Funders and editors, please require more forward thinking, and more actionable results.
Readability studies are about patients and their deficits. On average, Americans spend about 1 hour per year as a patient in a clinical setting. The near exclusive focus on patients’ in health literacy research excludes most of us, most of the time. It defines individuals as their disease. It suggests a person only needs health literacy when seeking or obtaining medical care. If research refocused on what promotes a person’s or community’s ability to use information and services for health, risk would less often progress to need, and fewer of us would be patients. We would discover interventions to complement information-improvement initiatives.
Focus on “low literate patients’” deficits is disempowering, disrespectful, and self-defeating. It positions patients as incapable of doing what is required to recover and cope. It breeds unnecessary dependence on professionals. It positions patients as victims of disease, and providers as their rescuers — both untenable positions in a system that strives to be patient centered and prevention focused and wants patients to self-manage disease and be partners in treatment.
We need no more studies to document the problem. We need to remove barriers, and develop skills, particularly interactive and reflective skills which are typically categorized as advanced health literacy skills and not included in health literacy studies. We need to understand the contexts in which people strive to act on information to keep healthy, live well with disease, and raise heathy competent children. We need recognize and research health literacy beyond the clinical encounter in everyday life where information is understood and acted on - or not.
Let’s stop analyzing how bad health-related information is, put into practice what we know about making it clear and actionable, and move on to figure out what, besides plain language, empowers people translate information into health promoting actions and outcomes.