Saturday, January 28, 2012

Arguments for a Universal Health Record – Part II

All animals can exchange information when in proximity to each other. Humans advanced this useful exchange to occur when the interacting parties are far apart, which makes the human animal quite unique. First came human couriers carrying verbal information, followed by human couriers carrying written missives, then came technology. Technology in the form of transportation vehicles, and technology in the form of unmanned transport of sounds and symbolic characters, changed the world. Telephones and computers on the Internet rendered the travel time of information from any point on the globe to any other point to milliseconds or less, but did not change the age old paradigm of information physically moving from one place to another. Until now.

This is the age of social media. Those of us who remember licking envelopes and stamps are often tempted to dismiss social media as a superficial waste of time better suited to perpetually distracted kids than any serious endeavor. When you think about Facebook, Twitter, Google+, Farmville and such, it is hard to believe otherwise. Ignoring the actual activities currently occurring on social media platforms, and looking exclusively at the mode of communication, one is forced to acknowledge that a change in paradigm has occurred, and we are reverting to exchanging information when we are in close proximity to each other, only this time around proximity is virtual, not physical. Information ceased to travel virtually, and instead, we do.

When we “go to” Google+ and engage in a lengthy discussion regarding Universal Health Records, we are creating and consuming content which resides in one virtual location – Google’s network of servers. If you want to participate in such conversation, you have to “come to” Google+, just like you had to come to Town Hall in days gone by, if you wanted to debate matters of importance. Unlike exchanging information by horse, train, telegraph or email, this communication paradigm is once again social, but flexible enough to occur in real time or at a time of your own choosing.

Back to medical records. Today most medical records are stored in physical format (paper) at various physical locations (brick and mortar facilities). Health information exchange is occurring mostly through courier, whether manned (patient, snail mail) or unmanned (fax). Those who advocate for electronic medical records desire to change the format of the record from physical to virtual, leaving the storage of virtual records pretty much as it is today. Once the content is computerized, it can also be exchanged by computer couriers, such as email and Electronic Data Interchange (EDI). This is supposed to make medical records “liquid” and the data can then flow from one computer to the other in a network of rivers and rivulets spanning the entire nation. Since such a complex system of waterways can be useful only if 100% clean water is allowed to flow through, as opposed to a mixture of seawater, oils, spirits, and other beverages, much care must be exercised at every medical records repository to transform whatever is released out into the public system to clean water. As discussed in part one of this series, ensuring water purity and building canals, dams and other infrastructure is expensive, fraught with peril, and assuming such system can be built, it is also obsolete right out of the box.

What problem are we attempting to solve by computerizing medical records? The customary answer to this question is that medical care has become extremely complex, it requires scores of professionals working together and, to foster better outcomes, they should all have the most accurate pertinent information at their disposal. Now, if we could bring all these professionals into one room filled with books and journals, and sit them down around one table, we would be just fine with old fashioned verbal information exchange. Since this type of physical proximity is becoming less and less likely, we find ourselves in need of a solution to allow disparate teams to collaborate on one project. We can do this the old way, and arrange for virtual information to flow electronically between team members, or we can do this the social media way, and arrange for team members to meet in one virtual space and work in virtual proximity.  But wait, there is more... In health care, our projects are longitudinal. Each episode of care builds on all previous ones and also informs all episodes to come. This in a nutshell is why the entire medical record must be an open and shared resource.

Given the realities of our health system of systems, I am being told that such selfless collaboration at the data level is very unlikely, and given the real and manufactured concerns with privacy and government oversight, having a universal comprehensive data store is politically impossible in health care. Nobody objected to the technical soundness of the proposed solution. Granted, health care is much more complex than Google+ or Google Docs, and we will need more data, more definition and a much bigger and more sophisticated transactional database structure. As much as I would like to, we cannot flip a switch and begin accumulating universal health records overnight. So how would we go about starting to move in this direction? 

One very promising idea comes from Dr. David Kibbe and the Collaborative Health Consortium. The notion of a health care collaboration platform, or clinical groupware, could do for health care what Google+ and Facebook did for virtual social interaction, but it stops short of providing a longitudinal and open medical record. If you were an avid Facebook user and recently tried to switch to Google+, you probably already encountered the big tall wall surrounding that particular platform. While this may be a minor nuisance when it comes to social media, and fully understandable from a software, or platform, vendor business perspective, it is not so minor when it comes to medical records, as every doctor who tried to switch EMRs can tell you. Every business should have the right to erect walls around its platform, its innovation and its intellectual property. No business should have the right to monopolize patient data, even if it was created by services and tools of a proprietary platform. The data layer must be separated from the service platform layer, because the data layer belongs to individuals and, in aggregate, it is a public good. 

Another suggestion was that initiating standardized information exchange may lead to the eventual creation of local and later regional data stores. Perhaps the various State HIE organizations would grow into such data repositories. Perhaps the ever expanding integrated health systems would accomplish something similar. Eventually, we may be able to connect all these repositories into a federated model of national health records. All this is possible of course, but this rudderless experiment strikes me as a major waste of time and resources. So here is a small suggestion. There are several billions of dollars appropriated for a VA/DoD joint EHR which is supposed to be open source. Presumably, such effort will yield a database schema sooner rather later. Let’s use that. Let’s define a minimum set of data, not much different than what is required to be exchanged for Meaningful Use, and begin populating a national database. It will take time before this becomes the authoritative version, but it will happen. Initially, we can mandate certified EHRs to use the national database to retrieve and update this modest dataset in real time. This should not be a very difficult task for EHR vendors. At the same time, we should allow new products to be developed against this new and open schema. What would be the cost of building a simple user interface to the Universal Health Record to display an accurate list of problems, meds, allergies, immunizations and lab results? Hint: very close to zero. What value would physicians, and patients, derive from the ability to access such definitive lists for any patient, any time, from any browser, on any device? You decide.

Health Information Exchange is an outdated paradigm. It is based on understanding the Internet to be an improved version of the Pony Express system. The Internet has evolved into something completely different and unless we evolve with it, we are doomed to be arming heavily for a war that has concluded and it will never be fought again.


  1. Again, Margalit, you're stating some powerful and welcome thoughts here.

    The notion that we can solve interoperability by mapping n to n systems via message standards that can each take 2 or more years to bed down is a furphy. It is NOT sustainable. Interchange is critical but will not be sustainable unless we collaborate at a more granular level, ie the clinical content, which incidentally should be consistent with the data patterns which we also use in our EHRs.

    If we can standardise the content, maybe as you suggest with a minimum data set but I prefer along the lines of the openEHR Foundations 'Top 10' archetypes - - then we have a strong semantic foundation for sharing a range of common messages. Varying levels of detail of these 10-20 core clinical concepts make up most of the content of our common messages exchanged - discharge summary, referral, ePrescription, Specialist letter. Standardising core content WILL make a huge difference - for exchange, shared EHRs, data aggregation and analysis, decision support etc.

    If we do decide on minimum datasets, we will likely get tied in knots while everyone decides on what is safe as 'minimum'. The rather freeing notion of the archetypes is to create a maximum dataset per clinical concept (ie be inclusive in the initial design phase) and allow these to be filtered down to express only the data elements needed in each usecase eg share only the required data elements per concept as required to fulfil the purpose of the message.

    Love to meet you if you're attending HIMSS


  2. Hi Heather,

    I know I'm barking up the wrong tree here. Nobody is going to rethink a strategy that is already well under way here, particularly since there are no business drivers pointing in this direction.

    As to minimum datasets, I was only thinking that a good starting point should be where we have codified information already, and lots of it. It is also, according to the poll you linked, and according to the many docs I interact with, some of the most important information. This should not preclude a sound architecture from day one, and hopefully those building the military EHR do have such architecture. It can grow over time. Everything can grow over time.

    Anyway, Americans are not ready to aggregate their health records, just like we are not ready to provide health care to all, so I doubt any of this is going to fly any time soon. My hopes are with Europe and other countries that are more Socially inclined.

    I would love to meet you too, but I will not be going to HIMSS this year. Perhaps we will have another opportunity some day.

    Thanks for reading and engaging in this conversation,

    1. Hi Margalit,

      Disappointed not to meet yet - next time, maybe!

      I am increasingly encouraged that there are pockets of activity such as we have discussed.

      Yes, many have their origins in Europe - this is where ISO 13606/openEHR have their original home.

      But also look to the work happening in the past 6-9 months in CIMI - watch this work especially closely. It is international in scope but driven by and involving many (some unexpected) US interests.

      I am optimistic that even if CIMI is not the final solution, it will positively influence our future healthIT path.

      And this are only some of the activity that I am aware of, way over downunder :)

      Kind Regards

  3. Here's a better solution. We need this for health care (thanks to Vince Kuraitis for originally sharing this): and they're seeking to solve the exact same problem you discuss in social media.

    Gary Thompson and I will be discussing this and much more leading up to and at HIMSS12 and the eCollaboration Forum.

    1. I don't think this is a contradictory alternative. I see it as highly complementary, where your UHR is just one of those threads that people access, combine and control.
      We need to remember that medical records are also legal documents and that providers have an equal interest (and assume full liability) for their integrity and veracity. That's why I would prefer to have ONE authoritative database, instead of assembling and reconciling discrepancies just in time, or maybe never until it's too late.

      My thoughts are with you at HIMSS and beyond, because at this point anything that opens up the information to the public is better than the status quo.

  4. Margalit, Funny I read this after making a comment on Bill Hersh's blog. We are also thinking the same in many ways. My idea was to utilize the HIE to build longitudinal health records from the patients data that is collected from different sources (they do this now. The unEHR or gateway connects the HIEs and provides the connection to the Apps. Have you looked at HL7 FHIR standard? I am liking it for 95% of data needed.

    1. Hi Jeff,
      Thanks for reading. I am replying to you privately by email, since I think I posted enough heretic content already... :-)