Health Data Portability Solves Interoperability / by David Driscoll

There’s a lot of talk in the news right now about health data and who controls it.

It started this past Spring, when CMS Administrator Seema Verma made headlines, stating: “It’s time healthcare caught up to other industries,” and that patients “should have all their information in one place,” rather than scattered like a breadcrumb trail throughout the various hospitals we’ve visited over the course of our lives, trapped in data silos beyond our control. Apple jumped into the foray as well, introducing novel tech to help patients directly monitor and track their health. Like many companies, Apple believes direct patient engagement will improve outcomes down the road, resulting in a new health economy where patients rely on various apps and devices to monitor and manage much of their own care.

Between government insistence and tech innovation, you might think the barriers to sharing our health data will soon be a thing of the past, but there’s a reason health data access is currently such a hot topic. It’s because the hospitals, doctors, and health plans that control our medical records don’t consider releasing them to be much of a priority, and that unwillingness to share has caused all sorts of issues for patients who need their data to coordinate their chronic care. Some people call this data-blocking or an “interoperability problem.” I think it’s much deeper than that.

Solving the interoperability problem is actually quite simple. Make the data available to patients and it becomes instantly portable. With the patient in control of their personal health information (PHI), the often proprietary concerns that bottle up data sharing disappear. The patient, who can rightfully request every bit of his or her health data, can walk it out the front door and share it with whomever they want. Portability solves interoperability. Once we have the data in hand, the organization and tracking of it can be accomplished via tech and self-monitoring applications. Getting rightful access to our data is still the hard part.

Far too many hospitals, doctors and health plans are out of compliance with HIPAA, the regulations that require them to release the data in the form or format the patient requests. These entrenched patterns of noncompliance have many causes, but one is that access to personal health data isn’t a pressing issue for the majority of healthy citizens. The average person rarely thinks about the importance of their medical history (until they need it), thus it’s only the truly sick, those who need access to their medical records the most in order to better coordinate their care, who bear the brunt of the bureaucratic roadblocks standing in the way.

But what if controlling your health information could potentially lower your insurance fees or your medical expenses? Would that get your attention? Data interoperability isn’t nearly as buzz worthy as the rising cost of your healthcare, so let’s talk about your potential economics instead.

A recent article in Politico noted that Medicare costs are surprisingly going down, citing improvements in care coordination for “complex patients”—those that account for the majority of US healthcare spending—who often “ping pong around the system, driving up costs with each hospital admission or ER visit.” A second Politico article added that in order to help manage these costs, hospitals and other providers believe they need to “do a better job connecting patients’ health records,” writing that many health care experts see IT solutions to organize digital health data as “a potential pivot in both care and cost control.”

With access to complete data, doctors could access a patient’s health history to help formulate a treatment plan, and payers could then reduce wasteful spending by refusing to reimburse institutions that repeat unnecessary tests or procedures. Several studies have laid out the potential opportunities for data oversight to help decrease spending, noting that “many payers have shifted from fee-for-service compensation, which rewards physicians for treatment volume, to risk-sharing arrangements that prioritize outcomes. Under the new schemes, when treatments deliver the desired results, provider compensation may be less than before.”

Financial incentives are always a great motivator, but I think we can advance healthcare—potentially significantly—simply by enforcing existing HIPAA right of access laws and allowing patients to control their health data. So why don’t we start doing this? Because health data is an increasingly valuable “asset” for companies that know how to profit by it. There’s little incentive to share it or improve the current system. Rather, companies are competing to aggregate and control our health data, curate it, and sell it for their profit, while the patients deal with the consequences.

This. Stops. Now.

It’s high time for patients—those who have the most to gain—to take data ownership. Like I said before, there’s a lot of talk right now about health data and who controls it. On one side there are those who stand to profit from that control, and on the other are billions of citizens who simply want the care they deserve, at a reasonable price. Despite what you might hear from your hospital, the P in HIPAA stands for portability, not privacy. Let’s start using our HIPAA right of access to make our data truly portable.

I can’t guarantee a reduction in healthcare costs, but I’m convinced that the known benefits of better care coordination through data portability are more than reason enough to start.

-Anil Sethi