WASHINGTON, D.C.—Federal health IT leader Donald Rucker, M.D., said an upcoming interoperability rule will include "solid" privacy protections for patients as they share their medical data.
Speaking at Health Datapalooza on Tuesday, Rucker—who is the head of the Office of the National Coordinator for Health IT (ONC)—acknowledged that privacy in a digital world is a challenging issue. But he reiterated his perspective that patients should be able to easily access and share medical data.
"It is our human right as patients to have access to our data," he said.
Rucker was pushing back on health IT vendor Epic's lobbying efforts against the proposed rules, including an email Epic CEO Judy Faulkner sent to customers encouraging them to sign an opposition letter. The letter cited risks to patient privacy and intellectual property if the rules are finalized now.
According to reporting from CNBC's Chrissy Farr, about 60 health systems signed the letter.
"Most of their customers did not sign on to that letter," Rucker said. "If you parse out the big academic medical centers, only three out of 100 AMCs signed on."
He also called out hospitals that signed the opposition letter due to their claims about data privacy concerns but then disregard patient privacy when filing lawsuits for unpaid medical bills.
"One of the signers of the letter is known for taking thousands of patients to court. If you take someone to court, that information becomes public discovery. Their medical care is now public. It's part of the court record," he said. "Looking at protecting privacy, we need to walk the walk here as we look at who is saying what and letter-writing campaigns."
Almost a year ago, ONC issued a proposed interoperability and information-blocking rule that defines the demands on healthcare providers and electronic health record (EHR) vendors for data sharing. The rule also outlines exceptions to the prohibition against information blocking and provides standardized criteria for application programming interface (API) development.
Department of Health and Human Services (HHS) leaders have not offered a timeline for when the rule will be published, but many have speculated it will be released during the Healthcare Information and Management Systems Society conference in March.
While Epic and many hospitals have come out against the interoperability rules, many technology vendors, including Apple and Microsoft, along with health plans and consumer advocacy groups have urged HHS to move forward with publishing the rule.
Four healthcare leaders recently penned an op-ed in Health Affairs calling for ONC to publish the rule immediately. Omada Health’s Lucia Savage and University of California, San Francisco’s Aaron Neinstein, Julie Adler-Milstein and Mark Savage said the ONC rule will not make the current consumer privacy protections worse.
"All health care stakeholders who are concerned about that issue should raise it with Congress and state legislatures, which have authority to act, rather than request to delay the ONC’s rule, delaying critical improvements to interoperability, access, innovation, and ending information blocking," the authors wrote.
APIs are the technology used to link IT systems, such as EHRs, with apps and will help bring healthcare into the modern app economy, according to Rucker.
ONC's vision is for patients to choose what apps to use, he said
"We've often looked at interoperability in a narrow view, which is just as a replacement for moving the patient’s chart. Modern computing and APIs offer a vastly richer and more empowering global computing environment. Well-built APIs can do almost anything that your creativity allows," he said.
Before Rucker took the stage at Health Datapalooza, HHS Secretary Alex Azar also addressed the upcoming interoperability rules and the Trump administration's commitment to putting "patients in charge of their data" and called out industry stakeholders who are "defending the status quo." They are protecting a health records system that is "segmented and Balkanized," he said.
"We have a serious problem—and scare tactics are not going to stop the reforms we need," Azar said.