The College of Public Health is gearing up for National Health IT Week, a nationwide celebration from Oct. 2-6 focusing on the benefits health information technology brings to the U.S. healthcare system. To celebrate, we're waiving the application fee for our Master of Science in Health Informatics program in October! Click here to learn more information, including how to apply.

By Tom Martin, Assistant Professor of Instruction and Graduate Health Informatics Program Director

A recent difference of opinion between former Vice President Joe Biden and the CEO of a large electronic health record (EHR) company has highlighted an ongoing challenge in our healthcare system: how do we give patients access to information gathered during the course of a medical visit? 

Here’s what happened: during a conversation with Epic Systems CEO Judy Faulkner, Biden asked her why patients don’t have access to their own EHR. Faulkner asked him why he’d want access to his record, and suggested that he would only understand a fraction of it. Biden reportedly responded that he would understand a lot more than she thought—and that his interest in his EHR was his own business. 

In reality, there is legitimacy to both arguments. To understand the current challenges with patients accessing their information, we need to dig a bit deeper into the history of public policy about health records.

In 1996, just as the internet was getting big, President Bill Clinton signed the Health Insurance Portability and Accountability Act (HIPAA) into law. HIPAA sought to protect patients or employees when they changed jobs.

Later updates to the law provided additional guidance and requirements for the use of technology to maintain protected medical information. The Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009 accelerated the adoption of electronic health record technologies. Hospitals and healthcare providers transitioned from paper recordkeeping to digital services, increasing demand for EHR services, and a framework was created to guide the process.

These laws have made health records more secure and more widely adopted by healthcare providers. But it’s more difficult than ever for patients to access their own records—something that initiatives such as the GetMyHealthData coalition have highlighted. The solution isn’t simple. Care providers use a multitude of disparate systems, and access to information needs to include input from patients, care providers and EHR companies. So what can each party do to advocate for better patient access—and ultimately for patient wellbeing?

Patients: know your rights. Patients have a legal right to access their medical information, and recent updates to HIPAA require providers to make your information available to you for a nominal fee in the format in which it is collected—including digital formats.

Healthcare providers: open your notes. OpenNotes is an international organization facilitating a movement to make healthcare more transparent by asking providers to share their notes with patients. Research has shown that 99% of patients who have had an encounter based on the open notes principle would like to continue to participate in actively sharing notes.

EHR vendors: embrace the open platforms movement. Application Programming Interfaces (APIs) and computing architectures like Blockchain are bringing more seamlessness to the transfer of information across disparate EHR systems. Sharing information is not easy—but at the end of the day everyone deserves access to information that plays an important role in how they are cared for.