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.

About the author

Anne Zieger

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

3 Comments

  • It shouldn’t be forgotten that the patient is the rightful owner of this data, and EPIC et al are mere facilitators.

    IMO, a patient’s history format should resemble an internet blog, with access provided only to the patient and designated providers. It doesn’t need to be as hierarchical and highly-structured as it is in current EMRs. The blog would contain hot links to X-rays or other material in pdf or other web-friendly formats.

    But the issue currently is really about monetization, and that currently means having control of the data and not working very hard to encourage sharing of that data. In a blog format, perhaps the hosting service would charge the current providers a fee for the hosting privilege.

    Just a thought.

  • Hi Anne!

    It’s been a while and I do appreciate your useful posts here.

    On this topic, I’m appalled by how, over 40 years that I’ve been involved with medical computing, medicine has turned into a business for pretty much everyone including the hospital “providers”, the physicians complaining non-stop, the pharmas inventing “digital therapeutics” as 21st Century Snake Oil salesmen, and government’s revolving door of public-private partnerships to solve interoperability.

    Medicine used to be a science, like math and physics, and a human right like clean water and safe roads. Not any more. Now we have computers.

    Happy holidays,
    Adrian

  • Hi Anne,

    I think you have highlighted one of the big issues in healthcare IT. While everyone talks enthusiastically about collaboration interoperability and openness, it is in fact not in the interests of many healthcare providers to make this happen.

    Dr David Blumenthal, then US National Coordinator for Information Technology, now head of The Commonwealth Fund described the problem thus:

    “If we had a functioning healthcare market that worked like other markets to optimize quality and reduce cost, there would be no need for meaningful use, the HITECH legislation, or government intervention. You’d see healthcare exchange as ubiquitous as ATMs and air travel. But you don’t, because you have a dysfunctional healthcare market, and that’s why we needed to create this legislation”—the HITECH Act.

    “Another way of thinking about exchange is that we are asking Toyota, BMW, and Lexus, to exchange their consumer lists, their records of repair, their consumers’ preferences, and their financial terms, as though they weren’t competing for customers. That’s what we’re asking hospitals and physicians to do. The fact that it doesn’t happen shouldn’t surprise anyone. Or the fact that vendors aren’t exactly enthusiastic, shouldn’t surprise anyone. It reflects the healthcare market.”

    In my view Anne, we should have some very frank discussions on this topic and try to resolve it before going too much further – as it is the big stumbling block preventing data sharing.

    Kind regards,

    Tom Bowden – Cognoscenti Digital Health

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