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."
By contrast, Clement McDonald, M.D., a professor at the Indiana University School of Medicine and director of the Regenstrief Institute, both in Indianapolis, makes a strong case for a centralized model. He points out that the Indianapolis Network for Patient Care (INPC), which stores data in uniform formats on its own servers, is one of the few RHIOs actually up and running. The INPC now serves 15 hospitals already and contains 700 million discrete records on 5 million patients. For data producers, McDonald compares the system model to a self-storage facility. As messages reach the RHIO, the INPC middleware converts them into a common code and creates logical connections that permit cross-linking patients across multiple institutions. Authorized users see information on an individual patient aggregated on one screen, but annotated to show points of data origin.
Mark Frisse, director of regional informatics programs through the Vanderbilt Center for Better Health, Nashville, Tenn., notes that RHIOs can deliver value to participants well before a consensus is reached on network details. Users tapping data sources outside their own organizations easily adjust their expectations. "Hospital CIOs are so used to being badgered to death over details and fine-tuning internal systems," he says. "It's hard for them to step back and realize that, where regional data exchanges are concerned, all people want is information in any format."
Frisse, whose center is coordinating development of a RHIO in the Memphis, Tenn. area, insists that providers will recognize the value of information networks. For example, payers increasingly are balking at reimbursing hospital emergency departments for tests they perform because they lack access to patient health records, he explains. Pharmacists want to avoid errors and paperwork. Private practices can streamline their own processes, but still need to be able to "get information in a simple and inexpensive way on what's happening to [a] patient everywhere else," Frisse says.
Although almost everyone agrees that operating costs of RHIOs will be shared by participants, there's no consensus on how to do that. "I think the business model of RHIOs is a wide open issue," Diamond says. "I don't think this country will ever see a clear winner. This is a country with a long history of innovation and entrepreneurial models. Our concern is that the patient and the consumer and their needs are at the center of those ideas."
In short, RHIO advocates are impatient but upbeat, accepting trial-and-error as the price of progress. In trying to develop coherent, regional health information infrastructures through diverse, grass-roots coalitions, there's really no other alternative.
Fred D. Baldwin is a contributing writer in Carlisle, Pa.