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The Feds’ strange love-hate relationship with health IT policy

With less than loud fanfare — barely a peep, really — the Office of the National Coordinator for Health IT (ONC) finally last week released its ONC-Coordinated Federal Health Information Technology Strategic Plan.

The plan is more than two years overdue and came only after scolding from a Government Accountability Office report in 2006 and an internal, semi-secret review of ONC’s doings by the Institute of Medicine late in 2007. The IOM criticized ONC for the lack of a viable strategic road map almost four years after President Bush’s call for interoperable health information technology and personal health records. A lot has happened since 2004 in this area, though you’d hardly know it reading the ONC Plan.

ONC is a top-down, heavily bureaucratic,
large-medical-enterprise-centric, and large-IT-vendor-led juggernaut
that has always been out of touch with what goes on down on the ground
where consumers, patients, nurses, and primary care doctors live and
work.

By out-of-touch, I mean completely oblivious to the impact that the
Internet and the Web have made in virtually every other
information intensive industry, profession, and realm of social
interaction outside of the stilted world of health care. Out-of-touch
as in asking military defense contractors to bid on a separate and
wildly expensive National Health Information Network in order to make
it possible for "interoperable" exchange of health information between
Harvard and Stanford, and similar large institutions; a plan that
caused former Intel chairman Craig Barrett to comment drily, "We
already have a NHIN; it’s called the Internet."

But there is something eerily obsolete
and downright weird about a strategic plan offered up by ONC in the
dying days of the current administration that proposes sometime in the
next four years to "achieve an interoperable health IT architecture for
the nation in support of patient-focused health care and population
health." While at the same time, the report ignores — and I mean completely
ignores — the progress being made in the private sector to enable
personal health information to travel safely and securely on the Internet using the same IT and communications
networks that most information for commerce, and an increasing
amount of health data, already employs.

What time zone have these folks been lost in?

It’s as though the last four years never occurred. It’s as though
these people and institutions never heard about medical search, health
social networking, wikipedia, Google Health, Microsoft HealthVault, or
the Continuity of Care Record standard. To read the ONC Strategic
Plan
you would never know of the existence of HealthGrades and the
other quality and transparency reporting sites on the Internet; the
SureScripts network that was used for 100 million ePrescriptions
last year,; the hundreds of  thousands of lab results delivered to
medical practices over the Internet using Web applications every day;
or the thousands of medical practices that have deployed Web-based
technology for billing and claims administration, Web portals for
communications with their patients, and clinical systems for helping
with care management. 

The biggest misstep (other than the RHIO fiasco) that occurred at
ONC’s inception was the emphasis on developing new standards, based on
the erroneous assumption that a lack of health data and IT standards is
the root cause of the unwillingness of doctors, medical practices, and
hospitals to adopt health information technology, or the failure to
adopt at a rate fast enough to satisfy Drs. Brailer, Kolodner, and the
most expensive IT vendors (see Extormity and Seedie for
a refreshingly satirical commentary on why EMRs aren’t jumping off the
shelves in the US of A.)  As Adam Bosworth has said on several
occasions, the standards for data exchange always work themselves out
when the incentives within an industry or economic sector reward
efficiency through market forces. Absent those incentives and market
forces, standards are all anticipatory and largely useless — or worse.

The second biggest misstep taken by ONC has been to entirely remove
the consumer from the equation, and to ignore the force of the analogy
that is powering consumer/patient impatience, even anger, at the
calcified hairball our health care industry has become. That is the
analogy with consumer experiences of convenience, affordability, and
service excellence from companies across a wide spectrum of industries
that have effectively integrated the Internet and the Web into their
DNA, from FedEx to NetFlix, from Southwest Airlines to L.L. Bean, and from CNN to iTunes. Education, commerce,
banking, the financial services, and personal communications are all
online.

Too much of health care is still offline, and
nothing in ONC’s obsolete strategic plans reflects this reality or
recognizes the progress that is being made despite ONC’s befuddled time
warp.

Will somebody, please, push the "reset" button on health IT policy inside the Beltway?

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5 replies »

  1. Guys,
    First off, most excellent comments there. It is nice to see other folks outside the small area of strapped PCP’s actually getting most of it. Yes the enterprise based software vendors that want to secure their place at the trough thru cutting out their competition is all too real. What amazes so many of us on my side of the fence is how so many of the medical organizations that are supposed to be objective and analytical thinkers are just getting in line behind all the CCHIT (it’s out joking way of gettingn around censors for $h!t and we call their plan such) as we like to call it back on a user board I post at a lot.
    But I am just as concerned about centralised health records kept on big servers to be targets for both hackers, crackers, as well as the government and the insurance carriers. The present standard has a “Back Door Portal” that is supposed to allow the insurance carriers in any time they darn well please to spy on patients and doctors alike. And why the AMA, the AAP, the AAFP and all the state medical societies are not furious about all this is beyond me. Remember that via Medicare and Medicaid “the state” is just about the largest payor of health services and now they can get in there anytime they darn well please??? Is this not still America?
    Right now we have a new mandate to capture and create statewide databases of all children and their basic health information with the new “vaccine registries”. NYS just made it maditory for all healthcare providers that vaccinate kids to have to create them an account if they don’t have one, enter their basic demographics including mother’s mainden name (ID fraud right there if the data is ever gotten a hold of) every shot they have ever had (unfunded mandate too for staff time compiling and entering this data) date, manufacturer, lot number, you get the idea. And they must realize that there are civil liberty issues here because anyone over 19 can opt-out if they choose too. But parents and legal guardians can not do likewise for their own kids. And they are really wanting us to con our 19 and overs into signing on too. Lastly, now any child born in the state will be captured at birth right at the hospital! Welcome to 1984 ladies and gentlemen.
    From what I understand so far the state, the courts, the insurance carriers, the doctors’ offices, and even the school nurses’ offices will have access to this data. Now I don’t know about you, but I certainly don’t think we can promise that all ports of entry here can be always drum tight… We had a nice top of their class group of kids right here in our area hack into their school computer system and start changing their own grades, dropping some of the grades of kids I gather they didn’t like, and messing up other data too I heard. But now my kids against my better wishes should be in some statewide server? And these servers and systems are supposed to be interconnected nationally as well. Just great.
    All these centralized medical records and registries just smells to the heavens of an Orwellian evils that is an all knowing and controling state. My wife (she’s the FP, I;m the practice manager) and I feel that the best way to protect people’s health privacy is to keep most if not all records “de-centralized” at the hospitals, clinics and small offices around the country. Our small little solo office is just small change that for the most part we are not even on anybody’s radar to break into.
    With PCP’s that have nice, easy to use basic EMR’s with specialists and hospitals that actually send proper reports and notes back to the primary patients can have one pretty darn good complete record all without having “the state” and the nasty insurance carriers data mining the heck out of all of us. And like with any other study I as a consumer of healthcare want my right to “opt-out’ of any and all studies. No spying portal for me, thank you very much. My health issues are nobody else’s business. Who says that every small little practice in the country has to be part of some large enterprise based, government controled data mining and for what end?
    Why do you think the carriers want in to your medical records? So they can use the data and diagnosis against you and your doctor. Do we really trust these people anymore? I certainly don’t and neither should anyone else. They have an anti-trust waiver granted them by congress and they collude each and every day to keep profits up by hurting patients and doctors, espeically primary care doctors. They are a legalized Cartel that over controls both sides access to one another. They are the OPEC of healthcare. And as such none of us should trust them running their paws thru all of our PHI, protected or private health information.
    So until we have real protections, not the present lies of protections of our health information, the concept of centralized medical records should be dead on arrival. If you think I’m just some paranoid read this link about warrentless access to your medical records. It is here now, in our America and we must protect our liberty from such nasty people and their use of the bill of rights as a piece of toilet paper to blow their noses in.
    http://www.aclu.org/privacy/medical/index.html
    But when PCP’s can even afford to keep the lights on, pay down their med school and business debts no less actually get ahead or plan for a decent future, the idea of expensive enterprised based, unfunded mandated bloated programs that change for the worse the way their offices actually flow and work, and require them to chart in total inappropriate data mining, drop down after drop down choice way, CCHIT certified EMR’s will not be welcomed in down on the ground on the frontlines of primary care medicine.
    You want to really save lots of money on healthcare? KISS espeically for primary care. Pay PCP much better so they can do the IMP, Ideal Medical Practice model and return to small and solo practices where docs know their patients and their issues. Not the factorys that lower payments have forced most docs into, or you can starve your ethics as we do…
    We have one of a handful of “QuickBooks of EMR’s” in our office Amazing Charts. It doesn’t have a portal and it can only data mine so well because the doc gets to chart in her own words even with templates that she herself creates as she builds her practice and records. It is wonderful and you would just about have to tear the thing from our bloody finger tips if your tried to take it away from us. With a little more funding because his solo practice target market could afford it Dr Jon Bertman could make this thing into a monster all while keeping it so simple to use and learn.
    With more primary care, practiced at a slower pace with longer office visits because we finally pay the proper 2008 rate for these office visits, so docs can have much smaller panels of patients and stay on top of their panels via good old fashioned care and positive relationships with their patients, we will have just about the max amount of healthcare savings we can get. Just let good dedicated folks like my wife do their job, get out of her way and stop having less knowlegable folks manage her ever move, that is what she is supposed to do, managed the patient’s care and help the navigate the healthcare system. What do these bozos think PCP’s were learning how to do during med school and residency?
    So in closing protect our medical privacy by not giving into the invassive spys in the government and the health insurance industry and not centralizing medical records, Keep it Simple Stupid, and finally allow PCP’s to do what they already know how to do, care and manage patients’ healthcare needs. Oh and if you could finally find the courage and conviction to pay them a living wage so they can get off the hamster wheel and start giving the nation the care we all need and want.
    Thanks for listening….

  2. Dear Jeff and others: Thank you for your feedback. I think the best way to “address ONC’s problems” is to let it sunset with the Bush administration, and start over with the Obama or McCain administration, creating an Office of Networked Personal Health Information. But I think you’re right on the money in your comment that avoidance of broad Web consciousness is a problem larger than health care, and it really does cut across many agencies and bureaus that have an interest in consumer empowerment.

  3. David,
    Although not healthcare-specific, the government’s blind spot viz-a-viz the Internet and the Web has made it into the mainstream technical consciousness and is resulting not only in totally valid criticism, but an action plan to deal with the problem.
    Ars Technica ran a post about a Princeton study that drew similar conclusions to your own about government Web sites in general, and recommended that they should prioritize adoption of Web-standards compliant content before they worry about changing their architecture or trying to implement Web2.0-ish functionality. The upshot was that individual Web developers would then “mash-up” these data sources faster and better than the government can.
    It’s not always easy to get the public or the technology community excited about healthcare, which is often portrayed as the immovable object in both the mainstream press and in technology trade publications. Maybe the best way to address ONC’s problems is to address the broader issue of the government and the Web in general, and be grateful for the trickle-down benefits?

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