The role for tech
Most patients can access medical data through their patient portal. But while patient portals provide a convenient way to view data, they could be more useful if they also contextualized what the information means for patients and their care, said John Moore, CEO and founder of market research firm Chilmark Research.
Electronic health record vendor Epic Systems has been refining its patient portal to make it easier for patients to navigate and find relevant information. The company overhauled its patient portal user interface in 2020 and is currently working on a project to help patients better understand test results and remote patientmonitoring data, said Sean Bina, the company’s vice president of access and patient experience.
That could involve illustrating if a patient’s results are within a normal range or tracking how they’re progressing over time. Cerner, another major EHR developer, doesn’t view its patient portal as central to its patient engagement strategy, according to Sam Lambson, the company’s vice president of interoperability. He said the company’s strategy is centered on letting patients download EHR data to a smartphone app of their choice.
Part of the Office of the National Coordinator for Health Information Technology’s data-sharing rule involves a push to make EHR data available to patients through apps, specifically by encouraging EHR developers to deploy application programming interfaces that align with a popular data-sharing standard known as Fast Healthcare Interoperability Resources.
EHR vendors must make those FHIR-based APIs—a type of software that lets applications communicate and share data with one another—available to customers by the end of this year to maintain certification from the ONC.
Today, there’s an early ecosystem of apps that provides patients with basic access to health data, ONC chief Micky Tripathi said. He said he hopes to see developers create apps that go beyond displaying data—perhaps ones that help patients manage specific diseases, like diabetes, or that connect patients to clinical trials.
That disease management use case is an area that Dr. Don Rucker, chief strategy officer of data-sharing startup 1upHealth and ONC chief during the Trump administration, also said he’s expecting to see emerge. He sees potential for developers to create apps that bring in price transparency and quality data, to make healthcare more “shoppable.”
He suggested apps could help display data in a more digestible way for patients, similar to how weather apps build upon raw data by illustrating the forecast or formatting temperatures.
University of Massachusetts’ Biomedical Informatics Natural Language Processing Group, known as UMass BioNLP, is developing a tool called NoteAid, which uses natural language processing to identify medical terms in clinical notes and explain them in plain English.
The team so far has defined more than 20,000 of the most common medical terms.