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.

Arguments for a Universal Health Record

We passed the one thousand mark on products certified as EHR technologies for ambulatory care and the five hundred mark for inpatient care, and there is no relief in sight. In addition, there are multiple other software products that are routinely used in health care, such as standalone practice management and billing systems, claim processing software, pharmacy programs, lab, imaging and other diagnostics software, personal health records products, and more recently a veritable explosion in mobile applications ranging from monitoring your heart to evaluating your happiness. I don’t know of any other industry where so many disparate software packages are able to communicate and cooperate with each other seamlessly, and yet this is the goal of the gargantuan effort of those who develop interoperability standards in health care. If you’ve ever been involved in software systems integration, you probably know all too well that the weakest and most unstable link is always at the interface between products, even those built by the same vendor, regardless of the agreed upon standard. When it comes to seamless operations and cost effectiveness, nothing beats true database level integration.

For those who read this and have an irresistible kneejerk reaction tempting them to cite examples such as ATM networks, telephone networks, Google or email, please understand that this is an apples to unicorns comparison. Assuming that our ultimate goal is to have all health records for all people available at all geographic locations at all times, is weaving a web of rickety interfaces between thousands of products, really the best option? It is, if you sell existing, or enabling, technology for this arrangement, and it is not, if you intend to use, or pay for, the end solution.

The usual arguments against a Universal Health Record, and its scary database in the sky, are that we must build on existing infrastructure; that rip-and-replace is cost prohibitive; that a free market should provide as many choices as possible; and that privacy is best served by keeping data close to home, and certainly out of the hands of Big Government. Sounds pretty reasonable. What if we dig a bit below the surface though?

Medical Records

• Assumption: At any given moment in time there can be only one correct version of a complete medical record for any one person
• Fact: Currently, various parts of the medical record are stored at various locations, by various organizations, in various formats
• Fact: Most organizations possess unique content, but also content overlapping with what others store, containing multiple discrepancies and various errors
• Observation: Using partial medical records for provision of care could be desirable, inconsequential, dangerous or lethal, depending on which parts are missing
• Observation: There is conceptually no reliable way to know whether parts of the medical record are missing at the point of care, let alone ascertain the criticality of missing parts

Health Information Exchange (HIE), as its name indicates, is intended to shuffle fragments of the medical record from one organization to another just in time to inform the provision of care. The government and various other organizations are diligently working on standardizing the contents, the format and the means by which medical records data is communicated. Since the thousands of software programs deployed in health care all store data in different formats, using different data dictionaries, different storage systems and different terminology, it is envisioned that each system will have some sort of transformer at its edge that will translate the inner workings of the system before sending information out, and execute the reverse procedure before letting outside information in. Once the standards are finalized, all technology vendors will be building (or buying) such “transformers” and everybody will be communicating seamlessly. Could it really be that simple?

Reconciliation

Unlike banking, where managing a checking account at your local bank does not require immediate information on your Cayman Islands holdings, medical care operates on a single record set of data elements. Since this record set is being altered at various care facilities, health information exchange must continuously reconcile the data elements. So for example, let’s say that you visit your primary care doctor complaining of chest pain and he diagnoses gastrointestinal disease and prescribes antacids, but you are still concerned and decide to see a cardiologist in the city, who diagnoses angina. Shortly after visiting the cardiologist office you get hit by a bus and end up in the local ER. Was your cardiologist aware that you have been complaining of chest pain for the last 20 years, angina was repeatedly ruled out in spite of your concerns that Aunt Mary also has angina, and antacids always worked for you? Is the ER aware that you just got diagnosed with angina and have a shiny NitroMist sample in the backseat of your car? Is your primary care doc going to be appraised of your adventures?  In a world of perfect information exchange the answer is yes to all questions.

However, perfect information exchange in this case requires that your primary care physician pushed your medical records out to the cardiologist, including your fixation with angina and Big Macs, or that the cardiologist was able to locate your primary care records and pull the information in. It also requires that the ER was able to obtain your primary care records from back home, any other medical records from other providers and also the very recent cardiologist records and combine all those data points in one authoritative record set. This reconciliation process would occur every time you seek care and every time you, or other diagnostic facilities and eventually devices, update your records in any fashion. And these transactions will have to execute without a unique patient identifier just for you, and while processing and propagating privacy rules which may differ between various care providers and exchange intermediaries.

Now imagine millions of people with similar needs, and you have many millions of transactions flying around back and forth between thousands of software programs executing in hundreds of thousands of locations, from industrial strength data centers to the lonely Dell server under the printer in a doctor’s office. Yes, the contents will be standardized by those edge transformers, but every relay, every handshake, every acknowledgement and every translation back and forth to the native software program constitutes a point of possible failure, and every reconciliation of multiple messages from disparate sources is an error waiting to happen.  In computer land errors don’t usually wait for too long before they happen, and this has nothing to do with lack of standards. Sending applications lose connectivity intermittently and go into a peculiar state of limbo. Receiving applications often get stuck on one bad message, creating huge processing queues on the other end. Messages mysteriously disappear only to be found in a log file or another patient’s chart. Every new release is always an adventure. This is how things are today, with only a fraction of the envisioned number of transactions in the brave new world of a seamlessly connected health care system.

The Power of One

The alternative to having a flimsy system with a multitude of moving parts is to have one unified database system, with one architecture and one schema definition. This does not necessarily mean one EHR. We could of course have a single EHR built on top of this database system, but for those concerned with innovation, free markets and with the problematic one size fits all approach, by all means, let’s build thousands of EHRs with user interfaces and functionality to fit every individual preference, all accessing the same exact database, containing the same exact records. This Universal Health Record will be, by definition, complete and correct at all times, since all health care applications will be built on top of this database, much like browsers are built on top of the World Wide Web. Switching EHRs should be as simple and straightforward as changing from Firefox to Chrome, not to mention how happy the folks advocating substitutable applications instead of walled gardens would be. Oh, and the sum total of investment in a homogeneous data infrastructure is dwarfed by the various other public and private initiatives, all ultimately funded by tax payers.

The 800 pounds gorilla in the room is of course privacy and to a much lesser extent security. A medical database system of this magnitude would have to be built and administered by the Federal Government. Patients would have to be uniquely identified in the system. Granted such Universal Health Record would accessorize well with a universal health care system, but let’s face it, if you are on Medicare or Medicaid, the government already has your medical records. Private payers have mega databases chockfull of medical records and so do EHR companies and pharmacies. Your data is being constantly de-identified, sold, re-identified and exploited for financial profit. Once the planned information exchange network kicks in, a host of State and private agencies will also begin building their own repositories of medical records. The privacy horse has left the barn, and the best we can do now is regulate the use of what was once private. At a minimum, the Universal Health Records database will ensure that you can see everything everybody else is seeing and have some say in its accuracy and utilization, which is orders of magnitudes better that the alternative.

Commedia dell'Arte

"Accountability is something that is left when responsibility has been subtracted."
-- Pasi Sahlberg


This was the year when America turned on its doctors, and on itself. Not the 300 million citizens who are busy with other existential threats, but the elite 1% that effectively runs America, and the cadres of intellectuals who provide grant funded scientific cover to our leaders no matter how misguided they seem to be.  Health care is a fiscal mess and someone, other than policy makers, must be held accountable. The greedy little doctors who are over treating us to enrich themselves are a good target and so are all of us greedy little people who refuse to go peacefully and expediently into the night. The same strategy is being applied to education, with the pathetic self-serving teachers obsessed with their benefits and the misfit children who ought to be cleaning toilets instead of learning, identified as the culprits for our educational fiasco. Mind you, the elite 1% is not experiencing either education failures for their children, or health care difficulties for their families. For them, this is not personal, it’s business, and they are about to make us an offer we can’t refuse.

A hundred years ago, give or take a couple of decades, America delegated the responsibility for taking care of the sick to the medical profession, and as science advanced by leaps and bounds, people were greatly rewarded with better health and longer life, and doctors were rewarded with prestige and financial prosperity.  Some say too much prosperity, some say too little, but all in all, fewer than 10 cents of each health care dollar go to physicians. Professional responsibility for sick-care does not require one to be a saint and it is not necessarily incompatible with seeking higher remunerations for one’s services. However, something went very wrong along the way. Ever so gradually doctors have lost control of their profession to the rising corporate and public interests in health care who acquired complete jurisdiction over physicians’ reimbursements. Doctors became the servants of two masters, responsible for one and accountable to the other.

This obviously unworkable situation caused enormous problems during Managed Care I (the HMO). On the eve of Managed Care II (the ACO), our leaders are proposing, on behalf of the people, to release the medical profession from the moral and ethical responsibility which formed the foundation of the patient-doctor relationship and replace it with uniformly measurable accountability to public and private payers. Patients are advised to reject the old ways of paternalistic physician managed care, in favor of the empowerment afforded by payer, health system or employer managed care, which is certain to bring about better health care at lower costs everywhere except in Connecticut. Physicians, who enter apprenticeship as teenagers and graduate somewhere in their thirties, are having difficulty letting go of the historic burden of responsibility. Patients seem not to have read the official memo, and most are still expecting doctors to uphold their end of the ancient bargain. There are of course well publicized and well marketed exceptions.

While responsibility is entrusted, accountability must be managed, monitored and acted upon. From a patient’s perspective, the locus of trust must shift from the doctor to monitoring organizations. While the old trust was based on long term relationships, word of mouth or gut feelings, introducing much variability in outcomes, the new trust is based on facts, calculations and objective data, hence the controversial importance of Electronic Health Records (EHR), which are increasingly fitted to facilitate the transition from old to new.  EHRs too are the servants of two masters, used by one and governed by the other.

Early EHRs were built and sold to doctors as tools to enhance practice revenue and personal income. Interestingly enough, very few physicians found that proposition enticing, and EHRs did not sell very well. Today’s EHRs are prescriptive data collection tools, with budding capabilities for reporting and exchanging information, and largely promissory abilities to deliver relevant evidence based protocols at the point of care. As the Meaningful Use incentives program enters its second year, physicians are increasingly purchasing and using EHRs. A minority is truly excited about a digital future, but the majority of EHR users, and practically all those still sitting on the sidelines seem to be asking the same question: how does this help with patient care? Well, it does, and it doesn’t, depending on what one means by patient care.

Most physicians are looking at EHRs as tools to help them do a better job. These doctors are still under the impression that they are at the center of health care delivery and EHRs are tools to assist them discharge their responsibilities to their patients. They are looking to computers to help search a medical record in intelligent ways, abstract all pertinent information and no more, manage repetitive tasks on their behalf, deliver timely reminders, provide advice upon request and become invisible when not needed - in short, the perfect butler. This is about hands-on patient care, one patient at a time.

Those who govern EHRs are continuously harmonizing them, through the Meaningful Use regulatory system, to promote accountability of EHR users. They need data. They need boxes to be clicked, numeric values to be captured and buttons to be pushed, and they need everything compiled and transported out to analytics engines to assess performance or lack thereof. They don’t need to know about Mary’s Lasix trouble, but they do need to calculate the p value from paired t-tests for the average change in percentages between baseline and subsequent years across patients qualifying for the measures. This is about standardized patient care at the population level.

Today’s EHRs have some features serving their users, but most development is geared to serve the governors and as a result, EHRs are not able to please either one of their masters. As Managed Care II blooms and the doctors for the 99% transition to accountability regimens, minding their p-values and t-tests, EHRs will become fabulous engines for enterprise data collection and processing. When the powers to be come to the realization that government intervention based on the assumption that people are irresponsible, greedy, dimwitted and largely inconsequential is doomed to fail, and Managed Care II joins its predecessor in the annals of failed policy, EHRs will finally become slick, intelligent and nonintrusive servants to both responsible doctors and their patients, helping deliver better health care at lower costs, one patient at a time, and by definition across the sum total of the people, because technology is not the limiting factor. Responsibility is.