As State Health Information Exchanges and Federal efforts (NHIN Connect/NHIN Direct) implement the data sharing technology that will enable all providers in the country to achieve Meaningful Use Stage 1, I'm often asked "but when will this healthcare information exchange technology be able to retrieve all my records from everywhere when I'm lying unconscious in the Emergency Department and cannot give a history?"
Here are my thoughts about the trajectory we're on and how it will lead us to supporting the "Unconscious in the ED" use case.
Meaningful Use Stage 1 is about capturing data electronically in EHRs. Getting healthcare data in electronic form is foundational to any data exchanges. By 2011 we should have medication lists, problem lists, allergies, and summaries available from EHRs.
The data exchanges in Stage 1 are simple pushes of data from point A to point B - from provider to public health, from provider to provider, and from provider to pharmacy. There is no master patient index, no record locator service, and no centralized database containing everyone's lifetime health record.
The Stage 1 data exchanges are the right first step. Serving as chair for a health information exchange for 12 years, I can tell you that pushing data from point A to point B builds trust and breaks down political barriers to data sharing. The policy needed to guide push technology is straightforward, since the parties involved in the exchange are limited - the sender and the receiver. Consent can be simple. For a referral, this might be "do you permit me to send your data to a specialist so that your care can be coordinated?"
But how are we going to get to a model that supports the pulling of data by emergency rooms?
There are several engineering approaches.
One is to create a master patient index for a state or region so that the identity of patients seeking care is known. Once we have a master patient index, we can build a record locator service to keep track of every site the patient visits. Then, we can build a consent repository so that the patient can control what is shared. During an emergency department encounter, summaries can be pulled from those sites listed in the record locator service which the patient has agreed to share.
I know that this approach works, because it is what I implemented at the hospitals of CareGroup in 1997 as the focus of my MIT thesis.
However, it does have scalability problems. Given that there are 500,000 doctors and 5000 acute care hospitals, the engineering complexity to pull data from multiple, disparate sites is significant and it requires that all sites support real time queries 24x7x365, maintaining the necessary security and robustness to enable such interchange. That's a tall order.
An alternative, that is simpler from an engineering perspective and achievable with the Stage 1 push technologies looks like this.
What if payers, providers, and private vendors offered something called "the electronic medical home"? The patient needs to pick some hosting option they trust. Just as Stage 1 of meaningful use supports push transactions from provider to provider, the same transactions could be pushed to the electronic medical home designated by the patient. This has the added advantage of providing a means to support the patient engagement provisions of Stage 1 (deliver summaries of ambulatory encounters within 3 business days, deliver inpatient summaries upon request, deliver lifetime health summaries upon request). If every producer of data (lab, pharmacy, hospital, eligible professional etc) pushed a copy of the data they generated to the electronic medical home chosen by the patient, then the patient could become steward of their lifetime medical record hosted by the trusted agent of their choice. Medical home data would be complete and constantly updated by data producers.
Patients could store their electronic medical home designation on a card in their wallet or on a medical alert bracelet. If patients visited the emergency room of a hospital they had registered at previously, the hospital would have a record of the patient's electronic medical home selection since the hospital would be one of the medical home data sources.
Ok, but what if the patient arrives in the Emergency Department, naked and unconscious so there is no electronic medical home designation on their body? I can tell you that in all my years of practicing emergency medicine, I have never treated a naked and unconscious patient, but let's think about the scenario.
There could be a national or a federated regional database which keeps a record of the designated electronic medical home - an "electronic medical home locator service" that is easy to implement because it only has to point to one place, not to every location which has records about the patient.
When the patient arrives naked and unconscious in the emergency department, assuming someone knows the name/date of birth of the patient, the electronic medical home locator service is queried and once the selection of medical home is known, that one location could be queried to retrieve all of the records.
Finally, just to play out the complete use case to its most absurd, if no one knows the patient identity, then we could suggest the electronic medical home locator service should contain a hash of a fingerprint, so that a biometric - a scan of the patient's finger - could be used to identify the electronic medical home designation and then retrieve the lifetime record summary.
1. In Meaningful Use Phase 1, we implement push transactions by 2011. Google Health, Microsoft Healthvault, Hospitals, and Payers should create electronic medical home repositories capable of receiving push transactions so that copies of inpatient, outpatient and lifetime summaries can be sent there. The transport mechanism used to push data to the medical home could be REST, SOAP, or SMTP, just as the NHIN Direct project has suggested. Ideally electronic medical home providers will issue each patient a Health URL , making it easy for EHRs and health information exchanges to route data to the correct location.
2. When an electronic medical home designation is elected, a copy of the designation and a hash of the patient's fingerprint is sent to a regional or national electronic medical home locator service.
3. When the patient arrives unconscious, the name and date of birth of the patient is used to query the electronic medical home locator service, retrieve the electronic medical home designation and then retrieve the lifetime record summary.
4. If the patient is naked and unconscious, a fingerprint scan could be used to retrieve the electronic medical home designation and their records.
5. All of this is empowered by Stage 1 of Meaningful Use as currently written. All that needs to happen is that providers, payers and vendors need to offer a place to push transactions on behalf of the patient.
Some have suggested that we should abandon the NHIN Connect, NHIN Direct, and Stage 1 push exchanges in favor of an engineering optimal solution of creating one large database of all electronic health records in the cloud.
Sometimes the engineering optimal solution is not the social/policy optimal solution.
The idea of creating a voluntary, opt-in electronic medical home supported by many hosts - payers, providers, vendors etc. is achievable and appealing.
In the US, we are wary of any top down, government mandate. We are suspicious of centralizing anything. Maintaining patient control of healthcare data and letting the market provide multiple hosting options seems like an achievable architecture that builds upon what we have already implemented and the meaningful use regulations already in place.