Researchers have created an online resource that helps patients better understand their health care providers’ electronic medical notes, which are often written in ways that make them difficult for the average person to comprehend.

A research team led by Dr. Hong Yu of the Edith Nourse Rogers Memorial Veterans Hospital in Massachusetts developed NoteAid, which is in the experimental phase. The biomedical natural language processing system recognizes medical jargon and links it with consumer-oriented, simplified definitions from external resources.

Veterans have access to their electronic health record (EHR) notes through VA’s web-based patient portal system, My HealtheVet. To use NoteAid, patients would put information from their EHR notes into an online box and click “Simplify,” according to a prototype of the software. The same information pops up but with highlighted words that are explained in simple terms when one puts a mouse over the highlighted language.

For example, in a sentence that reads, “The patient will be scheduled for a repeat EGD in one year for surveillance purposes of Barrett’s esophagus,” NoteAid defines an EGD as a “procedure to find and treat problems in the throat, stomach, and the first part of the small intestine.” Barrett’s esophagus, according to NoteAid, is “damage to the lower portion of the tube that connects the mouth and stomach.”

Yu said it is critical that patients be able to understand their medical notes. She refers to the Chronic Care Model (CCM), a guide to higher-quality chronic illness management within primary care. CCM emphasizes that patients are integral to a health care team and that they must have the knowledge, motivation, and skills to participate in their own care. NoteAid will assist in that regard, she said.

“NoteAid can enhance the processing of information within electronic health records,” Yu said. “Information processing models suggest that if knowledge is understood, agreed with, and retained, it can lead to a behavior change in patients, who can comprehend more about their medical status. A behavior change in patients can have a direct impact on physicians. According to CCM, this knowledge can transfer into motivation and skills through enhanced patient-clinical team communication, leading to a situation where patients are more actively engaged in their health care.”

Studies have shown that a patient’s ability to access electronic health records may improve his or her medical understanding and provide clinically relevant benefits.

However, EHR notes are often filled with convoluted terms and phrases, acronyms, complex medication and disease names, and other domain-specific jargon that are difficult for a lay audience to understand. Many patients are thus stifled in their efforts to make the most of their medical records.

A patient’s ability to comprehend clinical notes is related to health literacy. In a 2004 report, the Institute of Medicine (now the National Academy of Medicine) defined health literacy as “the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions.” The report said 90 million people–nearly half of all American adults–have trouble understanding and acting on health information.

Yu and her team thus created NoteAid. The initial system, developed in 2013, linked medical jargon to external online information sources such as the Unified Medical Language System, MedLinePlus, and Wikipedia. After interviewing patients, the researchers realized that many definitions in these sources were still too complex for patients to understand. Therefore, the team has been manually creating a glossary of lay definitions with a fourth- to seventh-grade readability level. Students from the University of Massachusetts medical school are helping build the glossary. A physician reviews all of the ter