Why We Need To Fix The Data Sharing Problem In Our Healthcare System

A doctor sits on their computer in the office via Getty Images. (seb_ra/iStock/Getty Images Plus)

By Matthew Whitaker

Nearly everyone who has visited a doctor’s office in the last decade has had the following surreal experience: you’re handed a clipboard and a pen and asked to fill out paper forms.

Of course, in an earlier era, this wouldn’t have been odd at all. At the risk of showing my age, I can still remember a bygone time in which all records were kept with the help of deceased trees. But today, signing and storing physical paper seems arcane and a bit anxiety-inducing. My first thought upon signing them: why isn’t this being done electronically? And then the natural follow-up: what happens if I need these records to be sent to a new doctor? Do they fax them or mail them?

What seems like a mere anachronism to me can actually be a life-threatening problem in our medical system. Records in the medical industry suffer from what experts call “fragmentation”: there isn’t a single, unified database to rule them all, and it means that patient data is a patchwork quilt. A whole series of companies own the data, and they don’t communicate well with one another. That leads to missing or incomplete records—and the possibility of grave medical errors.

Take, for instance, the opening of this gut-wrenching story written by a doctor named Ilana Yurkiewicz. Dr. Yurkiewicz told of seeing a patient, a veteran at the VA hospital where she worked. He had been complaining of fatigue and fever, and he was a diabetic. He couldn’t share his full medical history from memory, and Dr. Yurkiewicz couldn’t piece it together from the fragments available. She also knew that whatever entries she put in his records and no matter how carefully she entered them, they might be lost in translation as the patient moved on to the next doctor.

“That’s precisely what happened,” she wrote, “Over the next few weeks, Michael would return to my hospital more than once, in bad shape thanks to unconnected records that were not easy to transfer. In one instance, he didn’t receive the insulin doses that I had so carefully marked in his discharge form, which left him in a near-comatose state.”

Dr. Yurkiewicz’s experience isn’t unique. Some 20 percent of doctor’s offices still use exclusively paper records. And of those that have joined the information age, their data is often run by competing providers, meaning that a change in treatment or provider triggers a time-consuming, expensive process to figure out your medical history. To make matters worse, your ability to access your own medical records is limited. Why? Because your data belongs to a third-party provider. Put differently: the most private information about you is something you can’t see.

There’s a fix waiting in the wings: the U.S. Department of Health and Human Services issued a rule that would require what’s known as “interoperability.” In layman’s terms, the government would mandate that electronic health records operate seamlessly, that the system be opened up to third-party apps, and that providers couldn’t block the information flow from one provider to another. Importantly, they also couldn’t keep that information from you.

The government wants to encourage the sharing of medical data more freely and widely in order to help patients and reduce friction and cost in the system. It’s an important, long-overdue rule change—but if certain interests get their way, it might not happen. The companies who have made a killing on controlling patient data and medical information see this effort as a threat to their bottom line. Companies like Epic, a multi-billion-dollar provider of electronic health records, have been trying to scuttle the rule change.

Their rationale, of course, runs directly counter to what’s best for patients and providers. There’s no real argument about the value of data openness in healthcare, and the way you know is that this is a rare issue that has broad, bi-partisan support. It was President Barack Obama that signed the 21st Century Cures Act, from which the HHS rule is drawn, and it is President Trump’s HHS that is trying to bring it to pass. In an era of gridlock, this is a rare spot on the Venn diagram where both parties agree.

The only opposition comes from companies like Epic, who jealously guard the data because keeping it close enables them to charge fees for its use and access. They’ve also created legal moats around themselves, constructing elaborate NDAs that prevent data disclosure and authoring “hold harmless” clauses, which prevent them from being sued if bad data leads to a medical mishap.

What’s more, these companies argue that patients can’t be trusted with their own data—that you should not be able to see it, because your health history is too complex for you to understand. This notion hit its comedic peak in an astonishing exchange in 2017, when a frustrated Epic CEO Judy Faulkner asked then-Vice President Joe Biden: “Why do you want your medical records? They’re a thousand pages of which you understand 10.” To which the Vice President reportedly responded, “None of your business. If I need to, I’ll find someone to explain them to me—and, by the way, I will understand a lot more than you think I do.”

The proposed rule change by the HHS would fix this broken, piecemeal system. It is the right step for patients, providers, and the country at large—and we need to stand up to the forces trying to overturn it for their own self-interested reasons. Access to our health information is a human right, and our medical system will benefit broadly as data is removed from silos and shared among providers.

The data revolution that has taken place in the country and around the world has revolutionized other sectors in our economy. And given the rising healthcare costs in the US and the budgetary issues our government is facing, we have an obligation to do what we can to reduce the expensive friction in our healthcare system. To do what’s right.

Matthew Whitaker is an American lawyer and politician who served as the acting United States Attorney General.