Health information exchange organizations have been around well over a decade. They predate the Office of the National Coordinator (formed by Presidential Executive order in April 2004) and the ARRA (February 2009), and were originally formed to provide economies of scale for costs and to improve clinical outcomes through data sharing. The past 13 years have seen many changes in these organizations; in fact, the most common thread in healthcare information exchange may be change. Where are we now with exchanges and what does the future look like?
The Santa Barbara County Care Data Exchange (SBCCDE) was proposed in 1998 and funded, by the California Healthcare Foundation (CHCF), in mid-1999. As one of the oldest healthcare information exchanges in the country, it was influential in creating a model for how exchange was thought about and accomplished. I participated in this development both as a technical reviewer for CHCF and as a member of the Forrester Research ream that evaluated putting the SBCCDE software technology into open source. The SBCCDE effort ended in early 2007 before any large-scale exchange was enabled.
SBCCDE was thought of as a RHIO or regional healthcare information organization. The emphasis was on a geographic region, in this case Santa Barbara County that would serve as the organizing principle for the exchange. Technically, SBCCDE was a federated data management model, although at the time it was thought of as peer-to-peer. It allowed clinical data at each participating organization to stay in place, but provided a single way to query and display that data at each disparate site. This model has been evolving, in both the organizational and technical dimensions, ever since.
Technically, many exchanges are using an enterprise integration model, that is, using some form of integration backbone that allows information to be moved either to intermediate locations for processing and sharing, or to the requesting location. This is complex technically and also has liability consequences. The federated model has evolved to a federated data and services model, where a suite of services for things like record location, identity management, etc., are provided along with federated data management. There are hybrid models where services are provided in a federated manner, but data is still relocated (NwHIN is an example). All of these models tend to be quite complicated, so further evolution is toward simplicity, either in the Direct model, which uses secure messaging to provide exchange, or in emerging network models that provide substantially different and simpler security and service deployments.
Organizationally, there has been a lot of change. Many, many other models are being tried in addition to the regional organizing principle. These include: non-contiguous geographic models, single vendor-based models, models organized around provider-type (specialist type, etc.), models based on the demographic served (uninsured/Medicaid, etc.), IPA-based, PCA-based and others. In many cases, these health information organizations (HIOs) overlap in a geographic area. Two recent organizational trends are also influencing HIOs: state-designated entities funded through ARRA grants are now responsible, in many states, for the formation and technological deployment of exchanges, while some exchanges have turned to a single vendor approach to provide all the technology (electronic health records as well as integration and other technology) to try to simplify deployment. In the first case, the scale of statewide efforts has made deployment and even the vendor selection process difficult. In the second case, vendor churn resulting from implementation failures has also complicated successful exchange. The recent acquisition by payer organizations of a number of the largest HIE vendors has also clouded the picture.
There are even larger questions: Do any of these organizational types provide a better path towards sustainability? What information is most effective to exchange? Several of the primary care associations I've worked with were interested in exchanging demographic and administrative information to improve operations, as well as exchanging clinical information to improve outcomes. Also, what is the relationship of these organizational models to accountable care organizations? Is there an organizational type that will facilitate shared risk and its potential rewards?
Where has all this evolution gotten us? Thirty-one percent of HIEs, or 73 of the 234 organizations, in the eHealth Initiative survey are "operational," that is, they exchange some amount of data. Eight percent are self-sustaining. Much of the activity in the past several years has been focused on security and privacy, on opt-in/opt-out policies, and the granularity of these policies. This is one of the major issues that we attempted to address at SBCCDE, so perhaps the current focus will make progress where previous efforts could or did not. The proliferation of organization types seems positive, but only if it results in more sustainable systems or better outcomes. The technical architecture and implementation of HIEs seems to have improved, but a good deal of simplification is still needed.
As I was writing this piece, the Board of the CareSpark RHIO, about as successful an organization as I could point to, voted to close down because of sustainability issues. It seems like after 13 years, we still have many of the same issues that emerged very early in the development of healthcare information exchange.
According to the ONC there are 14 organizations exchanging healthcare information through NwHIN (as of July 2011), of which four are government agencies. The ONC’s expectation is that between 30 and 35 organizations will be participating by the end of the calendar year. This speaks to two different trends. The first is the complexity of the NwHIN technology. The CONNECT open source NwHIN implementation consists of more than 20 code modules that provide two different gateways and client technology as well as query facilities, document management facilities, etc. The last time I had a team deploy this it took several weeks and many iterations. This has to become simpler in order to be both usable and useful.
The second is the amount of change going on in exchange organizations themselves. Any technology that seeks to facilitate healthcare information exchange will need to provide a high degree of flexibility to be able to align with the many organizational patterns that will be explored. These technologies will also need to provide a variety of technical and deployment models (e.g., edge-node precedence, network-based organization, high-granularity privacy, etc.), and just as with the organizational models, technology models will have to be focused on simplicity of deployment and use, as well as providing capabilities that can support sustainability and improved outcomes.
David Hartzband, D.Sc., is chief technology officer for Resilient.
