Dr. Robert Rawley outlines the importance of moving from an organization-centric to a patient-centered approach to building healthcare data as the next stage in the evolution of healthcare.
We have come a long way, in the past several years, in our efforts to bring health care data into the modern era of electronic connectivity. Yet, the entirety of one’s health story is still fragmented into a variety of data silos that are largely organization-centric. Through the efforts of many very talented people, spurred by federal policy, health data is becoming more interconnected within the boundaries of specific health care delivery organizations (hospitals and their affiliated doctors, as well as associated ancillary services). In order to achieve a truly patient-centric ultimate goal, however, this paradigm needs to be turned on its head.
The road so far
In 2008, according to a major study published in the New England Journal of Medicine, only 4% of physicians reported having a fully-functional Electronic Health Record (EHR) system, and 13% reported have some sort of partial, basic system. That means that an individual’s health story was locked away piecemeal in paper charts that could only share information by manual retrieval using phone-and-fax – a situation many of us grew up in, but really could only be defined as byzantine.
In 2009, as part of the federal ARRA legislation, the HITECH program created an incentive program for physicians and hospitals to adopt and “meaningfully use” EHRs. It also defined the minimum feature set that an EHR needed in order to be certified. The Meaningful Use program began paying incentives to physicians and hospitals in 2011. By 2013, over 50% of physicians, and over 75% of hospitals, had adopted EHRs and were enrolled in the Meaningful Use program.
This tremendous surge in conversion from paper to an electronic health data platform was facilitated by major changes in the EHR vendor technology space. Though traditional, locally installed EHRs (client/server “enterprise” systems) benefitted significantly by this groundswell of adoption, much of the gains in the smaller-practice segment of the market was achieved through low-cost (or no-cost) web-based systems that did not previously exist to any significant scale. I was proud to have been involved in the creation and growth of web-based EHR technology, and to have seen the impact this had on the EHR landscape.
Current efforts at connectivity
The conversion to EHRs, however, has highlighted what was always there before – health data is fragmented, and an individual’s story is still broken into many different silos. Connecting them together is the next step.
But how? Matching patients between silos is not easy. How do I know that the records of “Mr. Gonzalez” created by my family practice is the same “Mr. Gonsalez” created by the endocrinologist, even if we are both using the same web-based system (Practice Fusion)? And how do I know about the hospital records on “Mr. Gonzales” who is really the same person as the two records above? Automated systems are fairly good at resolving these identity-matching problems, but they are nowhere near 100%. It often boils down to manual phone-and-fax (the default, when the systems are not quite there yet).
Health care organizations have gotten stronger, with hospital systems becoming closely affiliated with local community physicians, and in many instances actually owning those practices. Such organizations have worked diligently on creating “enterprise charts” for patients, so that health data can be interconnected within the domain of that network.
Health Information Exchanges (HIEs) are defined in HITECH, and are envisioned as hubs where different systems can exchange health data (assuming they have cracked the patient-identity nut) and break down the silos of EHR data. Federal funding has gone into seeding the creation of regional HIEs, with the idea that somehow these regional HIEs can find a business model that will allow them to continue once the federal stimulus money runs out. A challenge of this model is that it assumes that competitors (different hospital systems) will want to freely exchange data with each other.
What has been more common has been the emergence of “private HIEs,” organized around particular hospitals or academic institutions – a looser version of the “enterprise chart” that we have seen in more tightly knit settings. A given city, therefore, may have several “private HIEs,” each one around a different hospital system or academic center. Such HIEs may have difficulty connecting with each other – the larger issue being that there is little desire to share data with competitors.
Turning the paradigm on its head
To date, the efforts at connecting health data have been largely organization-centric. Yes, this is a step forward, linking previous smaller data buckets into larger, interconnected ones. We are early in this process, and the momentum here reflects the consolidation of health care delivery networks (a larger political issue around health care delivery). It does not address the somewhat-less-than-50% of independent clinicians who have yet to migrate from paper to EHRs in the first place.
But that is not how we consume health care. It is not all within the domain of a single institution or network. No organization-centric network will contain the full story of a patient’s health care situation. The belief in organization-centricity of health data is, in fact, part of the problem.
An anecdote might help illustrate this: “Mr. Gonzalez,” a patient of mine in the San Francisco Bay area, whom I have known for years as his primary care physician, takes a trip to Lake Tahoe (at altitude), where he collapses (a syncopal episode). He is taken to a local emergency room, where he is noted to have a heart rhythm problem (bradycardia) – the emergency room has no access to my records, and the family has an incomplete list of his medications. The patient is unable to get into his patient portal that is linked to my EHR, where a meds list is contained (he doesn’t remember how to do this, and has forgotten his password). So the emergency department does its work-up from scratch. It is determined that he needs an emergency pacemaker, and he is transported to Sacramento where a cardiac procedure is performed. I never get wind of this from either the emergency department, or the cardiac treatment facility in Sacramento (which has a nice integrated EHR system within their network). A week later, I see the patient for follow up in my office, and am surprised to hear the interval history. We scramble to get the information from the cardiac facility (phone-and-fax), in order to make ongoing plans.
This is not an unusual situation. No organization-centric data system will solve this problem. So what will? We need to move to a patient-centric way of building health care data. What does that mean? How do we do this?
A vision for the future
We need to build technology that is patient (consumer) centric – meaning that an individual can sign up for (or be given) an account which is unique (no duplicates). This platform needs to be able to connect seamlessly with all the EHR systems (where they exist) that belong to the hospitals and physicians who are involved in the care team. It needs to be mobile and easy to use. Patient-centered, yet provider-enabling.
It is not enough to simply store one’s EHR data in a central place, a sort of “mint.com” for health data. It is not a passive health vault, only to be opened on rare occasion. The patient-centered platform needs to be dynamic, and allow all the members of the care team to communicate with each other in a real-time way – more of an instant messaging platform that ties to each EHR and connects, through the patient, to everyone else who is involved.
In the anecdote above, if the patient (or his surrogate) were to say to the out-of-area emergency department or hospital, “here, let me connect you with my healthcare circle”, and do so from their smartphone, and this resulted in the emergency department knowing who else had been involved, what the medications and chronic problem lists were, and allowed for an instant-message-like way of letting everyone else (e.g. the primary care physician – me) know what was going on, then that would get us closer to the goal of interconnected health data.
Of course, no one has built such a system. Yet. But with this kind of vision, which is built on patient-centricity, rather than organization-centricity, new technologies are being built. It is precisely in these kinds of exciting new industries that I am focusing much of my attention. This is our next stage in the evolution of health care.