Federal policy toward regional health information organizations gets high marks from long-time advocates of IT's role in facilitating always-available medical data.
A survey published in 2005 by the Washington, D.C.-based eHealth Initiative and its foundation, identified more than 100 health information exchange initiatives in progress. These groups provide frameworks for electronic data exchange in their own areas and are increasingly seen as building blocks for a future national health information network (NHIN) enabling fast and inexpensive transmission of healthcare data among providers, laboratories, payers, and patients.
In November, David Brailer, M.D., national coordinator for Health Information Technology, Health and Human Services (HHS), awarded contracts to four consortia, each headed by a private IT firm partnering with other organizations and three regional coalitions. The contracts require developing and testing IT architectures and software that regional groups can use and that analysts at the national level can combine into a nationally acceptable network model.
The point of the research, Brailer says, is to ensure that future innovators "don't get stymied on security and authentication, networking integration-all the things that just have to be done [but] that can be numbingly complicated and incredibly expensive, horribly time-delaying, and, if done wrong, can lead to breaches of privacy and other things."
The four main IT architecture projects and their various partners are expected to share information with each other freely. Brailer emphasized that his office expects to incorporate parts from all four projects in national interoperability standards and networking tools that can be certified as meeting federal standards. "We're not trying to pick winners or losers here," he says. "These are not bake-offs. We're not going to take the best one home. We're going to create the best from the best."
The recent eHI survey confirmed "a clear migration toward multi-stakeholder efforts," says Janet Marchibroda, CEO of the eHealth Initiative and Foundation, which is an active participant in one of the four HHS projects. Until recently, she says, most RHIOs were led by large hospital systems and academic medical centers. Now, Marchibroda says, "We're seeing a trend toward more leadership by entities that engage purchasers, payers, clinicians, labs, public health agencies and even states."
Carol Diamond, managing director of the NYC-based Markle Foundation, agrees: "In the past, health IT and the conversation about electronic health records was very much an enterprise issue." Markle is supporting Connecting for Health as a participant in the HHS project initiative. "What we've learned over the last couple of years is that collaboration is not 'sort of a good thing to do.' It's absolutely mandatory for success."
Not surprisingly, RHIOs organized locally differ from each other in important ways. Many were designed for the exchange of administrative data, primarily claims. Others provide for transmission of clinical data, including laboratory reports. Some have a strong public health emphasis, primarily disease surveillance. Whatever an organization's initial focus, most observers see a general trend toward more comprehensive roles.
For system architecture, most foresee some form of decentralized structure. Under this model, each participating organization maintains its own data on its own servers in legacy formats but provides access to other users-either via direct access to the source organization's servers or via a hub server where interoperability problems are solved by middleware.
For example, Mike Skinner, director of the Santa Barbara County (Calif.) Care Data Exchange (CDE), envisions a pure form of decentralization: a peer-to-peer (P2P) system in which authorized users can easily access each other's data because their connections are managed or "switched" by the CDE.
"It's like being at one Internet site and clicking on another," Skinner says. "They can then be directed to another database." For hospitals using recent versions of picture archiving and communications systems (PACS), the CDE network supports true P2P exchange of images.
The problem, Skinner explains, is that few systems now support a true P2P approach, which requires Web-enabling and elaborate security features. Santa Barbara's CDE avoids this difficulty by copying data from legacy systems in HL7 format into "edge repositories," accessible from the CDE. (Think of an online photo album.) Users can access most data on the "edge" only by going back through the CDE hub. The need for edge repositories could vanish when existing legacy systems are upgraded to support P2P, Skinner notes.
Connecting for Health also plans to leave data under localized management. "Our model is very much a decentralized, federated model," Diamond says. "A lot of that was motivated by policy-not moving data out of the hands of institutions and providers who are responsible for the care of patients, but rather finding a way to allow them to network. We're starting from a very decentralized healthcare system. The best way to take advantage of all that's already out there is to build diversity into any solution."