Patients should have final say and control over their health data, HHS said Tuesday.
Trump administration officials Tuesday said they won’t be deterred by some industry opposition to their plan to move forward with rules to modernize patient data, make it portable, and create interoperability.
At the second day of the Academy Health combined National Health Policy Conference and Health Datapalooza, HHS Secretary Alex Azar and Don Rucker, the department’s national coordinator for health information technology in the Office of the National Coordinator for Health IT (ONC), said the issue of who should be in control of patient data is about access and choice.
The release of final interoperability and patient information access rules from Rucker’s office is expected shortly. The rules seek to end information blocking and give patients more control and choice over their data.
“Patients should be able to access their electronic medical record at no cost, period,” said Azar. “Providers should be able to use the IT tools that allow them to provide the best care for patients, without excessive costs or technical barriers.”
Last month, Epic, the nation’s largest provider of electronic health record (EHR) software, asked that the rules be delayed, saying that patient privacy is at stake.
“Unfortunately, defenders of the balkanized, outdated status quo have fought our proposals fiercely,” Azar said. “Scare tactics are not going to stop the reforms that we need.”
Following Azar’s appearance, Rucker was asked by Lisa Simpson, MB, BCh, MPH, president and chief executive officer of AcademyHealth, if he thought the privacy concerns are real.
Although privacy is a huge issue, he said, most people love the convenience of modern computing power contained in their smartphones. “I think when the rule comes out you’re going to see some pretty solid protections,” he said.
Regardless, he said, it's the patient who should have final say over their data—the rule does not mean that they have to do anything with it or take advantge of any options..
The issue of patient choice makes sense when one is not sick, Simpson said, but Rucker disagreed with that point.
"You can make healthcare decisions before you’re in extremis," he said.