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In the Public Interest

John Moore  The Health Information Exchange (HIE) market is the Wild West right now.  Vendors are telling us that theyre seeing an unprecedented level of activity both for private and public HIEs.  Private HIEs are being set-up by large and small healthcare organizations to more tightly align affiliated physicians to a hospital or IDN to drive referrals and longer term, better manage transitions in care in anticipation of payment reform.  Public HIEs are those state driven initiatives that have blossomed with the $560M+ of federal funding via the HITECH Act.

But this mad rush is creating some problems.

While the private HIEs seem to have their act together in putting together their Request for Proposals (RFPs), such is not the case for the state-driven initiatives.  Rather then formulating a long-term strategy for the HIE by performing a needs assessment for their state, setting priorities and laying out a phased, multi-year strategy to get there, far too many states are trying to “boil the ocean” with RFPs that list every imaginable capability that will all magically go live within a couple of years of contract reward.  Now it is hard to say who is at fault for these RFPs, is it the state or the consultants they have contracted with that formulated these lofty, unreachable goals, but this is a very real problem and unfortunately, the feds are providing extremely little guidance to the states on best practices.

While the above is more of a short-term concern, longer-term we may have a bigger problem on our hands.  The proliferation of private HIEs, coupled with state-driven initiatives with very little in the way of standards for data governance, sharing and use (this includes consent both within a state and across state lines) has the very real potential to create a ungodly, virtually intractable mess that will be impossible to manage.

So maybe it is time to rethink what we are doing before we get to far down this road.

What if we were to say, as a country, that much like Eisenhower did during his presidency to establish the Interstate Highway system, we made the decision that it is the public interest to lay down the network for an “interstate” system for the secure electronic transport of health information?  And rather than be cheap about it as we have done in the past dedicating only modest funding (e.g., NHIN CONNECT), let’s really make the investment necessary to make this work.

Yes, it won’t be cheap, but think of the alternative – 50 states, countless regions all with their own HIE.  Yes, states are required under HITECH to work collaboratively with neighboring states, but this will not lead to enough consistency to create a truly networked nation for the delivery of quality healthcare for all US citizens.

It is indeed time to take a stand for much like Eisenhower’s Interstate system, which I had the pleasure to enjoy as I traveled cross-country this week from Boston to my beloved mountains of Colorado, such an interstate system for the delivery of health information at the point of care will be something all citizens will benefit from. And taking a cue from the image above, rather than a “Symbol of Freedom” it would become a Symbol of Health.

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  1. In other words, even with robust interoperability standards, the real threat to the appropriate and open flow of patient data to those who should have it / need it lies less with the technology than with the politics. — james walker

    Well said!As I’ve come to understand in my adult life and via my profession, you do not trust the politicians and bureaucrats. The federal government is less trustworthy than the state government. The state government is less trustworthy than the county (or parish if you are in Louisianna). The county/parish is less trustworthy than the city/town/village. The reason being is that the further removed a politician is from their constituents, the less influence the constituents exert over their representative. Bureaucracies are worse. As they aren’t elected at all, they do not really serve a constituent. Rather they serve an “ideal” that was put in place by the prevailing winds from years ago.More to the point of the post, however, I see no reason why we should want to engage the federal government to come up with standards. I could see the NIST providing a clearinghouse and facilitating the discussion of standards. That would be as close as I let the “government” get. We have perfectly fine examples in the private sector where interoperability standards were developed by companies and trade groups with a vested interest in making interoperability work. You can look at the ASC EDI or the NACS standards for example. If you are more interested in “open standards”, look to the W3C and Oasis to name a couple. Those standards describe in painstaking detail how various business documents can be delivered (PO, Invoice, PO Change, Shipping Notice, etc…) as well as how to marshal, encode, decode, and communicate those documents.Remember, once you let “Uncle Sam” in the door, he more than overstays his welcome. Indeed, he takes up residence and eventually the household becomes his. Or put more succinctly, once you surrender control of anything to the government; very rarely do you regain that control.

  2. John its not about the public interest-its about money. Doctors could provide better care if they spent more time with each person-but then they wouldnt make as much money. So as the health care industry could have created health it in 1994 they now see a profit in health it.
    Public good isnt the prime mover in the health care industry as 70% of the public want the health care system overhauled

  3. Good brief post expressing a pithy dichotomy of extremes on a spectrum – top-down vs. decentralized HIE architecture. I agree with the gist of the post, that we need quick interoperability somehow; and I agree with Merle above about our ultimate goal so well-said: “Our objective is to make a patient’s complete medical record available to any care provider who treats the patient!” The devil, however, lies in the details. Unlike the internet, which is based on a common protocol for transferring text and images from point A to point B in an agnostic fashion, legitimate privacy / security concerns on patient data – as well as the lack of a unifying way to organize and prioritize medical data (for the H&P, which H&P are we talking about – the one done by the PCP or the one done by the medical student? For the dx list, whose opinion counts on the active dxs? etc.) – prevent a single protocol from emerging, short of a truly nationalized healthcare system, say, based on VistA. Frankly, I would vote for going with VistA myself, just to achieve a unified system – and maybe John has a point if we combine VistA with NHIN direct for starters. But such may be untenable at this juncture, and we have an ONC-directed purposely decentralized infrastructure for HIE. To my read, this isn’t necessarily a total loss – the lemonade we can (and should) make from the lemon of decentralized and as-yet non-interoperable HIE is that best practices can emerge not just in EMR, but in the inner and outer workings of HIE systems. As states begin implementing their federally-subsidized plans, 50 unique ways to skin the cat will serve as 50 laboratories for how to improve. My projection is that as widespread adoption of EMR progresses, NHIN direct will emerge as the ‘healthcare internet’ and interoperability standards will become more obvious. However, we must all be vigilant that silos with financial interest in keeping data sequestered for financial reasons should be stopped at every juncture from doing so. In other words, even with robust interoperability standards, the real threat to the appropriate and open flow of patient data to those who should have it / need it lies less with the technology than with the politics. Thus, each of us has a duty to keep things fair and patient-centered.

  4. John,
    I must differ with you. I have no problem with each community and/or state having its own HIE.
    I do have a problem, however, dictating that all HIEs must adopt a standard, mandated system. This folly implicitly assumes that all HIEs must be linked together for care providers to be able to access a patient’s complete record and coordinate the patient’s care.
    We neither need nor can we afford such a massive top-down system. To continue your analogy, John, what you are proposing is that everyone drive the same, standard vehicle on President Eisenhower’s Interstate Highways.
    Don’t get me wrong. I’m all for every care provider having electronic medical records in their practice and linking them, if they wish, in small, local networks. But I see no need for all of them to use the same system or be linked in massive, outrageously expensive networks.
    Our objective is not to build networks or store records on web servers or link them via the Internet. Our objective is to make a patient’s complete medical record available to any care provider who treats the patient! And there are better, cheaper and faster ways to do that. As you know, John, we have developed one such disruptive approach. I’m sure there are others.
    We are building a simple, cheap, easy to use system that does just that. Our MedKaz™ System stores the patient’s aggregated medical record on a simple device that the patient owns and controls, and wears or carries on their key chain. It is updated by their care provider after each visit, and when they give it to a care provider, they are fulfilling the networking function — without any of us spending one penny to build a network!

  5. > The “public interest” in individual care is
    > to spend as little as possible on the individual.
    What definition of “public interest” leads to that? What constraint is there on “possible”?
    This entire comment is BS.
    t

  6. The “public interest” in individual care is to spend as little as possible on the individual. This entire concept is BS.

  7. Yes, BobbyG, there will be lots of duplicative effort. You correctly point out in your blog post that the difficulty getting to “Meaningful Use” is not technical, but rather political. The duplicative effort bypasses non-local politics, and that has value. “Meaningful Use” even in the 2015 understanding of the term doesn’t really require integration beyond regions so long as professional medical leadership is there. Which is another political problem…
    t

  8. > within a couple of years of contract reward.
    Freudian slip? 😉
    Tip O’Neill told us “All politics is local”. So is healthcare local. The regional HIE is primarily about healthcare. Not that it isn’t worth doing, but a non-local (i.e. national) HIE is about something else. Which leads me to this:
    Dijkstra’s Prescription for Programming Inertia:
    http://en.wikipedia.org/wiki/Edsger_W._Dijkstra
    If you don’t know what your program is supposed to do, you’d better not start writing it.
    Stanford Computer Science Colloquium, April 18, 1975, headlined and famously quoted in “The Official Rules: The Definitive, Annotated Collection of Laws, Principles, and Instructions for Dealing With the Real World”; by Paul Dickson, Dell Publishing Company, 1978
    I know this is dating me, but today’s Extreme Programmers might pay some attention to the ancient wisdom. Of course, it is hard to blame THEM when fools throw buckets of money their way without saying first what the programs should do. I’ll have to get this little quote added to the Wikipedia page. It is about the only thing people read anymore.
    t
    PS: upon discovering this book, I was inspired to submit a couple of candidates to the Murphy Center for the Codification of Human and Organizational Law. I never heard anything back.
    1) Leith’s First Law of Urban Living: The shortest path between two points in an urban area is either under construction or you can’t turn left onto it.
    2) Leith’s Second Law of Urban Living: The price per square foot for apartment space is inversely proportional to the number of coats of paint on the walls, and directly proportional to the thickness of the carpet.
    3) Leith’s Law of Human Resources Organization: Compensation is inveresly proportional to the number of characters in one’s title. (contrast ‘Engineering Computations Aide” with CEO. This is probably a special case of some other, yet unnamed law. See ‘Nusbaum’s Rule’ for another example. I shall endeavour to discover the unifying principle.)

  9. I could not agree more: “Now it is hard to say who is at fault for these RFPs, is it the state or the consultants they have contracted with that formulated these lofty, unreachable goals, but this is a very real problem and unfortunately, the feds are providing extremely little guidance to the states on best practices.”
    In other words, well meaning well paid eggheads are in charge of patients’ lives.
    This is a takeover of medical care which will worsen all outcomes and increase costs. Report your complaints when patients are injured to FDA’s MedWatch.

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