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Thoughts on the PCAST Report

The President’s Council of Advisors on Science and Technology (PCAST) released a report this month ambitiously titled “REALIZING THE FULL POTENTIAL OF HEALTH INFORMATION TECHNOLOGY TO IMPROVE HEALTHCARE FOR AMERICANS: THE PATH FORWARD”, complete with current state of HIT analysis and authoritative recommendations to ONC, CMS and HHS on how to proceed going forward. Initially, I skimmed through the 90 pages of the report and very much liked what I saw. PCAST is recommending a federated model for health information, with medical records stored where they are created and a comprehensive view aggregated on the fly on an as-needed basis by authorized users, including patients and their families. PCAST is urging ONC to significantly accelerate efforts in this direction.  Perfect. And then I took a deeper dive into the details of the report, and disappointingly came across a series of misconceptions and questionable assumptions surrounding what is basically a very good, albeit expensive, strategy.

The State of Affairs

The classic opening to all HIT reports seems to be the obligatory comparison to “other industries”: “Information technology, along with associated managerial and organizational changes, has brought substantial productivity gains to manufacturing, retailing, and many other industries. Healthcare is poised to make a similar transition, but some basic changes in approach are needed to realize the potential of healthcare IT”. While this is true, we should also recognize that medicine is very different than other “industries” in that it lacks 100% repeatable processes. For example, the entire process of manufacturing, packaging, ordering, delivering, stocking and selling a box of Fruit Loops is exactly the same for every single Fruit Loops box. Automation of such process is easy. Unfortunately, people are not very similar to Fruit Loops boxes, and paradoxically, the lack of appeal and utility of current EHRs is in large part due to EHR designers thinking about Fruit Loops instead of the many ways in which people express Severity or Location.


The PCAST report continues with the common mantra regarding our “fragmented” health care system and the fee-for-service model which is preventing the availability of complete health information at the point of care and the advantages of larger health systems which, unlike small practices, “have an incentive to provide care efficiently and reduce duplication or extraneous services when possible”. They must be referring to Integrated Delivery Systems (IDN), since large hospitals and multi-specialty groups have many incentives, but reducing extraneous services is not one of them and if there is an entity which lives or dies by achieving efficiency, it is the solo or small practice operating on abysmal margins. Either way, we need technology recommendations for an existing health care system, not so much for some utopian system were payers and providers cheerfully align their interests with patients and tax payers in general.

Legacy and Condensed Water Vapors

Unsurprisingly the overarching thread in the report is describing current EHR systems as “legacy” systems, which will eventually become obsolete and make room for “innovative” technologies delivered via the Clouds. I can see how using centrally deployed and managed applications (not really a new concept) can be easier and more cost effective for most providers, but does the software have to reside in a vendor datacenter in order to qualify for a “no more software” stamp of approval? Would the many Epic installations accessed remotely by physicians qualify as Clouds? Or must they be deployed in an Epic owned datacenter, and be natively browser based, in order for the software to mysteriously vanish? Or perhaps Epic is too large and thus too heavy to ascend to the clouds? Epic, the fastest selling EHR system in the country, is a “legacy” product built on the 1960s MUMPS programming language, and so is VistA, the Veterans Affairs (VA) EMR, which seems to be a physicians’ all-time favorite. Perhaps the European Space Agency knows something we don’t, since they are taking MUMPS straight through the clouds and all the way up into outer space to map the Milky Way Galaxy.

After affixing the “legacy” label on the EHR industry incumbents, the PCAST report repeatedly emphasizes the government’s role in creating a “vibrant market of innovators”, particularly the “disruptive” type, citing the example of ARRA incentives leading to “substantial innovation and competition” and “more affordable systems and improved products”. This is pure fantasy. Some of the smaller, previously most affordable, EHRs have been forced to double their prices in order to comply with regulations. Most of the larger (legacy?) products have maintained their pre-ARRA pricing, or increased them. And then there are the literally all cloud, and no software to speak of, vendors, who preyed on physicians before ARRA and are continuing to do so after. It seems that Apple and its iTunes App Store has created the illusion that any kid with a completed “Programming for Dummies” curriculum can whip up a useful clinical decision support application in a couple of weeks, sell it on the App Store for $0.99 and help us all get healthy, if we would only give him access to mountains of personal medical records.

Privacy or Lack Thereof

The beauty of the PCAST recommended solution for health information exchange (details below) is that privacy preferences are built into each data element. Anyone attempting to access personal health information would be required to authenticate and validate that the patient’s privacy policy allows access to the requested data element. Moreover, all data will be encrypted both at rest and in transit between users, thus barring all intermediaries from reading or storing any personal information. Rock solid plan; that is until you run into this statement: “It seems likely that the modifications to HIPAA enacted in Subtitle D of the HITECH Act—in particular those that require covered entities to track all disclosures to associates—will further stifle innovation in the health IT field while offering little additional real-world privacy protection”. The PCAST authors seem to dislike the idea of tracking disclosures of personal health information.  Somehow, uninhibited disclosure (or outright wholesale) of patients’ private information to “associates” is a necessary condition for “innovation”. Makes you wonder what exactly is meant by “innovation”.

The Grand Solution

Let me say this again. I love the distributed data concept at the heart of PCAST’s recommendations. No big databases in the sky here. All the pieces of one’s medical record are housed by the institution that created each piece. When someone needs access to a record, or part of a record, an authorized query is issued (think Google search) and the requested information is located and aggregated across multiple data stores and displayed on the requestor’s computer screen (think Google again). The mechanism to achieve such wondrous task is by and large the same one Google uses, with added layers of security and privacy. These tools are dubbed “data element access services (DEAS)” which are nothing more than customized search engines for health information, maintained and operated by large health systems or purposefully built entities. As is the case with Google search, medical records will need to be indexed if the DEAS are going to find them. For this purpose, PCAST suggests “a universal extensible language for the exchange of health information based on “metadata-tagged data elements””. In plain English, medical records will be broken into atomic data elements, each having attached information describing the element (patient identifiers, what it is, when recorded, how, by whom, etc.) and most importantly who can access it (patient directed privacy rules). The search engines will presumably use these metadata tags to locate actual data elements, without ever needing to read the data itself, and return the results to the querying user. Of course, there are more questions than answers at this point, and some interesting discussions too, but the general concept is sound and very innovative.

Beware the Legacy Giants

While PCAST was deliberating and formulating its recommendations, at least one “legacy” EHR vendor was implementing the solution. During its user conference in October, Cerner unveiled “Chart Search”, which is a semantic search engine using Natural Language Processing (NLP) and a specific ontology to allow users to intelligently search a patient’s chart. As in PCAST’s recommendations, Cerner is indexing all medical records and is storing the indices in its own datacenter (cloud). The use of NLP and clinical terminologies, such as SNOMED, allows Cerner to perform contextual searches by concepts (searching for beta-blocker will return all occurrences of Atenolol, Metoprolol, etc.) and rank the most clinically pertinent results on top. You can view a very brief presentation of this feature, shown by my favorite family doc, Dr. Karl Kochendorfer, here. The Cerner semantic search is different than PCAST’s recommended solution in many ways and of course, right now it is limited to Cerner charts in one physical location, but it is real and currently used by actual physicians. Looks like those old “legacy” giants are still packing some punch after all.

In summary, PCAST’s basic concept of where HIT should be headed is very appealing and properly ambitious. The serious considerations given to privacy, security and patient preferences are refreshing, but in order to support the fascinating research agenda proposed in the report, government will at some point need to step in and curb the enthusiasm of Cloud owners, severely curtailing the commerce of medical records. I would have preferred that PCAST refrained from the fashionable and rather baseless assumptions on how innovation occurs and the equally worn-out subtle advocacy for unproven changes to our health care delivery system. Other than that, very interesting report.

Full disclosure: I have no financial interests in Epic, Cerner or any other EHR vendor

Margalit Gur-Arie blogs frequently at her website, On Healthcare Technology. She was COO at GenesysMD (Purkinje), an HIT company focusing on web based EHR/PMS and billing services for physicians. Prior to GenesysMD, Margalit was Director of Product Management at Essence/Purkinje and HIT Consultant for SSM Healthcare, a large non-profit hospital organization.

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David ClarkeBobbyGMargalit Gur-ArieBobbyG Recent comment authors
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David Clarke
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David Clarke

It’s interesting that the principal idea in the report is to put aside work on standards like HL7 that are the bedrock of interoperability in health IT in favour of a new approach to tagging individual data elements with XML. Now that idea may be good or bad, but one thing missing from the report is a statement of conflict of interest. There are three technologies described in the report as being the panacea – personal health records, cloud computing and data aggregation middleware. Now Microsoft has HealthVault (a personal health record) and Amalga (a data aggregation middleware product) and… Read more »

BobbyG
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Aza Raskin is this Wunderkind of the web:
http://en.wikipedia.org/wiki/Aza_Raskin
http://massivehealth.com/
I’m having trouble suppressing a “Mrs. Barky” Moment at this point.

Margalit Gur-Arie
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Thanks, Bobby. Who is that Aza guy????
On a general note, ONC is requesting public comment on the PCAST report. The specific questions and links to post comments are here:
http://healthit.hhs.gov/portal/server.pt?open=512&objID=1496&mode=2

BobbyG
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LOL:
“It seems that Apple and its iTunes App Store has created the illusion that any kid with a completed “Programming for Dummies” curriculum can whip up a useful clinical decision support application in a couple of weeks, sell it on the App Store for $0.99 and help us all get healthy, if we would only give him access to mountains of personal medical records.”
___
A waft of Aza Raskin here?
http://www.azarask.in/blog/post/leaving-mozilla/
Nice post, Margalit.