The Depressing State Of HIEs

Ladies and gentlemen, I’ve been following the progress of HIEs since the mid-2000s, and the story has always seemed to be the same.  HIE gets sparked by a grant or some entrepreneurial thinking, gets to rolling, looks promising, then dies because there’s not enough cash to keep things working.

Seven or eight years later, I’d love to be telling y’all that the HIE has magically matured, and that regional HIEs are taking off rapidly now that it’s clear everyone will need to be part of one at some point.  Well, I’m afraid that even that modest hope — let’s forget the National Health Information Network — doesn’t look like it’ll be fulfilled soon.

The latest downer came from the National eHealth Collaborative (NeHC), a public-private partnership funded by ONCHIT.   While the report was apparently intended to help HIEs grow, it also did much to remind us of the obstacles facing most public HIEs.

As Chris Muir, state HIE project manager for ONC recently told a press conference, the $564 million in federal funds that have been laid out to date to jumpstart HIEs haven’t gotten the job done.  He noted that in many regions, infrastructure doesn’t exist to support HIEs, but even if it does, few providers sign up. Then, even if they sign up, most participants don’t take full advantage of the network.

And wouldn’t you know it, the growth of ACOs has ended up spiking some HIE projects. For example, a successful HIE noted in the NeHC report told the conference that ACO growth is hampering his organizations operations. Some ACO providers are now blocking access to their data so competitors can’t get to it, said CEO Tom Fritz.

There’s also some technical obstacles faced by the HIEs, but those, I must say, seem solvable in an era when people are already making determined strides to allow interoperability between HIEs and outpatient EMRs. One group of federally funded HIEs, the Beacon Communities, is developing a continuity of care document that can be automatically exported to an exchange via a pre-arranged trigger, said Jason Kunzman, Beacon Community senior project manager for ONC.

Well, this is all well and good. But I still think I’ll be keeping my basic medical info on a thumb drive for now.

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.

1 Comment

  • Yes the state of HIEs is depressing, because most of them simply do not work for patients and doctors. We don’t need them to exchange data to coordinate care or improve quality, secure email via the Direct Project works fine.

    A quote from the story shows a key problem with HIEs: “Some ACO providers are now blocking access to their data so competitors can’t get to it”—-The problem is corporations and businesses that HOLD patient data imagine they own it. Why? It’s an extremely valuable asset they want to use and sell without patient consent.

    HIEs designed to further business interests will ultimately fail, because NEWS FLASH to data holders: YOU DON’T OWN PATIENT DATA. Patient data is not a corporate asset, even though many corporations treat it as if it is. The law and ethics still require meaningful informed patient consent before disclosure of health information; “HIPAA compliance” actually does NOT provide legal cover. According to the HIPAA Privacy Rule it’s the floor for data protections, not the ceiling. 67 Fed. Reg. at 53,212 (August 14, 2002).

    The only kind of data exchange that is legal and should be used for exchanging health data is direct exchange between two physicians or health professionals (or between a patient and a health professional after a patient gives meaningful informed consent for their data to flow for treatment or research.

    Patient Privacy Rights (PPR) endorses the “Direct Project” using secure email as the ONLY legal and ethical way sensitive patient information should be exchanged.

    It turns out that the only person who can easily, cheaply, and legally make patient data flow for all the right reasons (treatment, research) to all the right all the people (a specific doctors or researcher) at the right time is YOU.

    Only you can tell an ACO to send your data to an outside clinician —- and they have to send it. Only you can make your data “fluid”, because patients are the only stakeholders with clear, longstanding Constitutional, legal, and ethical rights to disclose personal health information.

    The public will not trust HIEs or national data exchanges unless they control the disclosures.

    In our comments about the NwHIN, Patient Privacy Rights (PPR) urged the Office of the National Coordinator for Health IT (ONC) to use this critical opportunity to address the fatal privacy and security flaws in current systems and state and federal data exchanges. “Multi-stakeholder” public-private governance at the state and federal level has failed to gain public trust. Public-private governance assures that industry, research, and government interests trump the public’s rights to health information privacy. See:

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