Progress in Health Literacy—Encouraging, and Not So Encouraging

We have known for years that a substantial percentage of the U.S. population has limited skills in both general literacy (the ability to write, read, and understand written material) (Kirsch, Jungeblut, Jenkins, & Kolstad, 1993) and health literacy (the ability to obtain, understand, and use health information) (Kutner, Greenberg, Jin, & Paulsen, 2006). We also know that clinicians and health systems do not always effectively communicate with patients who have limited health literacy or, for that matter, with patients who have adequate health literacy skills. Two articles in HLRP: Health Literacy Research and Practice give us a glimpse at how the U.S. health care system is dealing with these health literacy concerns. The results are both encouraging, and not so encouraging.

The article by Liang & Brach (2017) reports on data from the 2011 and 2014 Agency for Healthcare Research and Quality's Medical Expenditure Panel Surveys. Among the many items on the survey were questions that asked participants (1) whether their health care provider always gives them instructions that are easy to understand, (2) whether the provider always asks them to explain how they will follow those instructions, and (3) if someone in their provider's office always asks if they need help filling out forms. Compared to responses in 2011, respondents in 2014 reported significant increases in all three measures—a 10% increase in receiving easy-to-understand instruction, a 22% increase in being asked to explain how they will follow instructions, and a 16% increase in being asked about needing help with forms.

Although those percentage increases are noteworthy, the absolute numbers show us that there is still a long way to go. Despite the increase seen in the 2014 survey, nearly one-third of respondents still reported not always receiving easy-to-understand instructions, more than 70% said they were not always asked to explain how to follow those instructions, and more than 80% responded that they were not always asked about needing help with forms.

Furthermore, it appears that health care providers may ask those questions selectively based on “profiling.” For example, older adults were more apt to report being asked about needing help with forms, and members of racial/ethnic minority groups were more apt to report being asked to explain how they would follow instructions. Although that profiling approach may target people with a higher risk of poor general literacy or limited health literacy, it excludes many with poor health literacy skills who do not match those profiles. Universal health literacy precautions are not yet universal.

The other article, by Imoisili et al. (2017), examined the readability characteristics of patient education materials generated by Yale-New Haven Hospital's EPIC electronic medical record (EMR) system. We learn from this study that the EMR generates two types of patient education handouts: “standard” (written at the 7th–10th grade reading level, with the measured level varying depending on the approach used to assess reading difficulty) or “easy-to-read” (written at the grade levels 4.5–7.2, again varying with the approach used to assess readability).

It is encouraging that the developers of the EMR recognized the need for easy-to-read patient education materials. But, if the EMR generates easy-to-read patient education materials, what is the purpose of those other “standard” patient education materials that are written at the 7th–10th grade level—a complexity that exceeds the reading skills of average American adults? Shouldn't all patient education materials be easy to read? It is difficult to imagine a situation in which it would be appropriate for a clinician to give a patient a handout written at the 7th–10th grade level when there is a similar easy-to-read handout readily available.

The problem of complex EMR-generated patient education materials is widespread. When I give lectures or lead workshops on health literacy, participants invariably complain about the complexity of information for patients that is generated by their EMR, like after-visit summaries or information about illnesses, which the clinicians easily recognize as being difficult to read. It sounds like universal health literacy precautions have not yet made it to widely used EMR systems.

Overall, these two studies, which demonstrate improved communication with patients and the availability of easy-to-read EMR handouts, are encouraging in that they reveal improvements in the way clinicians and health systems communicate with patients. This is a testimony to the efforts of the many researchers and educators involved in the health literacy field, and to the more than 6,500 articles published since 1992 that turn up on PubMed using “health literacy” as a search term.

But, the results of the studies are also not so encouraging. They show that we have a long way to go if we are to reach the goal of universal health literacy precautions. As Liang and Brach (2017) point out, those universal precautions are still a “distant dream.”