Small Wonder Providers Don’t Like Sharing Patient Data For Free. It’s Becoming Their Whole Business.

During the decade or so in which I’ve been following data interoperability, the cleverest people in the healthcare and technology industries have come together to make disparate systems work together effectively.

While there are still a number of technical issues to iron out, I’d go so far as to say that sustained data interoperability is clearly possible.  After all, when providers within, say, an ACO decide to let it all hang out data-wise and share freely among themselves, you seldom hear reports of an IT rebellion. This is the case even though the number of disparate systems within a decent-sized ACO can be very extensive and the work involved in creating APIs for sharing isn’t trivial.

On the other hand, when local or regional healthcare organizations work together to create health information exchanges, the project is almost always a stressful one. Yes, some health information exchanges/networks have been embraced by their community, region or state, but if you dig down into the data they’re sharing, it’s hardly the richest set known to man. It’s hard to imagine that members wouldn’t get their back up if minimum data sharing requirements were more robust.

What all of this suggests to me is that that we’ve developed a huge blind spot regarding the role patient data now plays in healthcare organizations, and the extent to which hoarding it makes more sense than ever for providers.  In summary, as health data becomes the infrastructure of the business, rather than information that supports the product or services, providers have not only an incentive but actually a duty to keep control.

It’s not as though other industries haven’t given us some warning of where this was heading. In the case of the financial industry, the digital reserves these companies maintain already are their product. Now, healthcare is moving rapidly in this direction.

Though it’s harder to remove direct consumer contact from the healthcare equation than in other industries, the pandemic-driven explosion of demand for telemedicine, remote monitoring and other digital health services underscores just how far healthcare can be moved into cyberspace. And given this shift, is critical to confront the difference between the assumptions we are making about health data sharing and the actual world in which this data exists.

Historically, it made a lot of sense to insist that providers freely share patient data with one another. After all, maintaining patient records was a byproduct of the care process, and by sharing this information providers helped keep each other in business.

By this point, however, it’s time to admit that gathering, analyzing and using medical data is the core business of the healthcare industry — and that as such, that the data has immense proprietary value.  As our COVID-19 experience has underscored, it’s already possible to create a provider organization that manages large panels of patients effectively without ever seeing a single one of them outside of cyberspace.

None of this is to say that we can’t come up with a scheme that rewards providers adequately for the business risks they take in trading these such data with their peers. However, we should stop assuming that the benefits of such sharing far outweigh those of protecting the most viable assets they own.