Consumers, it seems, aren’t very good at deciphering the meaning of complex medical terms and conditions contained in their online medical records.

In fact, new research from the University of Massachusetts Medical School indicates the average American reads at or below an eighth grade level and over 90 million Americans have limited health literacy, meaning they can comprehend at least some of the complex medical jargon posted by doctors and others in their medical records. 50% of patients also do not understand at least one term in their medical file, says the University of Massachusetts Medical School.

“Patients with limited health literacy may struggle to understand the content of their medical notes, which can include visit summaries with medical terms, lab reports, and terms and phrases that are not common outside of medicine,” says Hong Yu, a researcher with the Department of Medicine University of Massachusetts Medical School. “A patient’s health literacy can have an impact on their desire to engage with their own personal health record.”

There are various test to measure how well patients can understand complex medical jargon. For example, The Rapid Estimate of Adult Literacy in Medicine is a 7-item word recognition test used by providers to assess patient health literacy.  But healthcare literacy tests don’t work inside a digital healthcare portal, Yu says.

To find out why, The University of Massachusetts Medical School identified 6 common diseases or conditions (heart failure, diabetes, cancer, hypertension, chronic obstructive pulmonary disease, and liver failure) and selected 5 notes stored in an electronic health record for each disease or condition.

The research revealed that measuring patient literacy inside the confines of a digital portal is very hard to achieve. “EHR notes do not align well with existing readability prediction formulas, making it difficult to estimate EHR note readability,” says the University of Massachusetts Medical School researcher say in recent post to the Journal of Medical Internet Research. “Consider the following example, taken from a de-identified EHR clinical note: ‘The monitor has not shown any dysrhythmias or arrhythmia either prior to or during any of his spells.’  A patient might struggle to understand the medical terms dysrhythmias and arrhythmia and might not understand what the monitor is or what prior to or during any of his spells is referring to.”

Because the use of digital portals is on the increase, healthcare organizations need a better way to measure patient literacy when they access and try to interpret their electronic medical record. In other words, before healthcare providers can go about the process of making doctor notes and related content less complex, they first need to understand more fundamentally what patients can—and can’t—decipher when they access their records online.

Most healthcare consumers do not understand phrases often used in cancer consultations and patients understand less than 30% of medical terms commonly used in the emergency department,” Yu says. As a result of the research, the University of Massachusetts Medical School used a series questions and tested using various forms of social media to develop ComprehENotes, a test of how patients understand and use the medical jargon in their patient portals. “The test is most informative at low levels of ability, which is consistent with our long-term goal of identifying patients with low EHR note comprehension ability,” the researchers note. “Most of the questions have low difficulty estimates, which makes the test appropriate for screening for low health literacy.”

With the first draft of ComprehENotes, researchers will next work on ways to distribute the health literacy test to a wider audience of users. “This work is a first step toward being able to evaluate patients’ understanding of their health based on information directly contained in their own EHR,” says University of Massachusetts Medical School . “These personalized questions can be administered to patients to evaluate their ability to read and comprehend their own notes.”

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