The Trump administration appears to be taking on one of the thorniest issues in American medicine: giving patients control of their own health care data.
About a week ago, Medicare administrator Seema Verma announced a new initiative called MyHealthEData. The program, according to trade publication Becker’s Hospital Review, aims to “enable patients to both electronically receive a copy of their health record and share their data with whomever.”
A few months ago, I did a deep dive into America’s health IT infrastructure — namely, why the fax machine remains the dominant method of transferring medical information in 2018. In other industries, the fax machine has become obsolete. But in medicine, where different electronic records can’t talk to one another, fax is often the default method for getting information from one doctor’s office to another.
When Verma announced this new plan, she cited another use of outdated technology in medicine: CD-ROMs. From MedCity News:
Verma can attest to health information access problems. While traveling last summer, her husband collapsed at the airport and stopped breathing. He was taken to the hospital and eventually discharged. When Verma asked his doctors for his medical records, they gave her five sheets of paper and a CD-ROM. This practice, she said, is outdated.
“Most computers don’t even take CD-ROMs anymore,” she added.
Making a health care system that doesn’t rely on fax machines and CD-ROMs is one of the rare areas of bipartisan agreement. The Trump administration, like the Obama administration before it, thinks it is really bad that patients can’t control their own data.
But the unique structure of the American health care system makes this a particularly vexing problem to fix — one that the Obama administration ultimately couldn’t conquer, and one that the Trump administration is now taking up battle with.
In my view, the hardest part of liberalizing patient data is that you have hundreds of thousands of hospitals and doctor offices all across the country who have a financial interest in keeping data private. If a patient can take her record from Hospital A and walk down the street to Hospital B to seek treatment, that’s bad for Hospital A’s bottom line.
“We don’t expect Amazon and Walmart to share background on their customers, but we do expect competing hospital systems to do so,” David Blumenthal, who coordinated health policy for the Obama administration from 2011 to 2013, told me late last year. “Those institutions consider that data proprietary and an important business asset. We should never have expected it to occur naturally, that these organizations would readily adopt information exchange.”
The Obama administration invested upward of $30 billion attempting to digitize the American health care system. They did make significant progress: The vast majority of American doctor offices and hospitals now use an in-house electronic record, which wasn’t true a decade ago.
But there was one problem they couldn’t crack: getting all those medical offices to communicate with one another, known in health IT as “interoperability.” I spent last fall visiting many doctors’ offices with a Rube Goldberg-esque way of transferring data: They would print out medical records and fax them to another office. That office would then take the printout and upload it to their own, separate electronic medical record.
Because these records have been faxed and scanned, they are often no longer machine-readable — meaning doctors can’t search for certain words or phrases in their patients’ records. Key data becomes significantly harder to access.
Verma, speaking publicly last week, said the Trump administration will “not tolerate” data blocking by hospitals — a practice where facilities make it really hard for others to access their own patients’ data.
But the big outstanding question is: Can the Trump administration make data flow really easily?
The Trump administration has signaled that it will overhaul the incentive system the Obama administration set up to encourage doctors to go digital. But it hasn’t shared many details about what sort of changes it plans to make.
When I interviewed former Obama officials, they felt like the key problem with this incentive program was it didn’t go far enough — that it gave doctors bonuses for adopting electronic records but didn’t provide financial incentives to have those shiny new records communicate with one another.
If they had to do it again, many would have restructured the program with stronger bonuses and harsher penalties for hospitals that don’t share data digitally.
But it’s not clear the Trump administration plans to go in this direction. Late last year I interviewed Donald Rucker, the Trump administration’s national coordinator for health information technology. (This was before last week’s announcement, obviously.) He described the goals of the Trump administration as those of “data liquidity.”
”What we’re trying to do ... is make the data more liquid, with security and HIPAA provisions,” Rucker said. “It will be similar to other consumer apps. Right now it’s the hospital’s choice, on some level, whether they want to share the data. But we’re trying to go to the world where it’s your choice or my choice, and if I want to shop at system A today or system B tomorrow.”
That would undoubtedly be a great world to live in. And the big question is whether the Trump administration can get us there — if they can solve the health data puzzle the Obama administration never could.
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