Earlier this month at a national health information technology conference, the Trump Administration announced an initiative to put patients in charge of their own health care data, improve data interoperability, and encourage data-driven innovation to improve patient health and outcomes. Unfortunately, the announcement lacked many specific actions to effectively implement the initiative. I agree with the administration’s stated goals, but real action is needed—and now is the time.
I have been intimately involved with the issues around electronic medical records through my leadership of the White House Cancer Moonshot and the American Economic Recovery and Reinvestment Act of 2009 (Recovery Act), and my oversight of the Veterans Affairs Department’s first-in-the-country service to make complete medical records available to patients. Through the Recovery Act, the Obama-Biden Administration made approximately $37 billion available to health care providers to subsidize the purchase and adoption of electronic medical records to improve health, reduce medical errors, and collect data in an organized fashion for research and discovery. Because of the Recovery Act funds, electronic medical records have been adopted almost completely throughout our health care system.
But the promise of electronic medical records has not materialized for one major reason: Medical record companies and health providers have implemented systems that are not interoperable. Many would say this was done on purpose because it meant they could lock up customers by making it time consuming and expensive to change systems. And even worse, they made it very difficult (sometimes impossible) for patients to get their own data quickly, cheaply, and in an easily accessible digital format.
The Obama-Biden Administration addressed the problem of access to data by patients and researchers in several ways.
- In the early years of our administration, the U.S. Department of Veterans Affairs (VA), the U.S. Department of Defense, and the Centers for Medicare and Medicaid Services adopted the “Blue Button” for veterans, service members, and Medicare beneficiaries, a simple, one-click program that allows patients to download their medical records and share with their health care providers, caregivers, and others. The current administration has announced Blue Button 2.0, which allows patients to access and use their data in new ways—a good step forward.
- As part of the Cancer Moonshot, the U.S. Department of Energy (DOE) and the VA agreed to a groundbreaking program in 2016 to have the VA’s medical records analyzed by the DOE’s supercomputers, and the VA funded a dedicated data network to be able the transfer of millions of records for this purpose.
- In 2016, the National Institutes of Health and the Office of the National Coordinator for Health IT, in partnership with the Harvard Medical School Department of Biomedical Informatics, launched “Sync for Science,” a pilot to allow individuals to send their health data to researchers with the Precision Medicine Initiative.
Despite this progress, there is so much left to be done.
I know that many people have had the experience—and frustration—my family and I had when we were learning about the medical research and health care systems firsthand while dealing with a loved one with cancer.
From what I learned over the last two years, there is so much opportunity to make things work better for patients, and so many of those solutions have to do with standardizing, sharing, and putting the power of data in the patient’s hands.
While I agree with the administration goals stated above, these health data issues are not new and we must all get serious and specific about the details to take action in the near term. We have now had nearly a decade to examine the consequences of how the electronic health record systems have been deployed. The industry has had ample opportunity to voluntarily address the issues of interoperability and putting data in patients’ hands, and they have not done so. Now is the time to do something about the data siloes they have created—to improve health and extend lives.