Playing the role of sometime-cartographers, healthcare policymakers and stakeholders have been working for several years to draft a new kind of national roadmap.
Known as the Nationwide Health Information Network (NwHIN), this map will someday connect communities – not with roads and bridges, but through technology that enables healthcare providers to span borders and share patient data.
Each state, however, has developed its own regulations for how health information can be stored and shared. And while the goal is to develop an information network that will enable the exchange of patient data throughout the nation, there may be as many paths to achieving that end as there are state-designated HIEs.
A Country Tale: Maine's HIE
Like most health information exchanges, Maine's is young. It began as a collaborative study in 2004, when an array of public and private healthcare organizations joined forces to determine whether the state was ready, in terms of both potential infrastructure and organizational interest, to build a statewide HIE.
Out of that discussion came a larger, stakeholder-based process, the goal of which was to develop a more thorough understanding of what it would actually take to develop an effective HIE. That discussion resulted in the establishment, in early 2006, of HealthInfoNet, an independent, non-profit organization dedicated to developing and sustaining that HIE.
Two years later, the organization launched its first demonstration project, connecting the state's largest providers. The project, which concluded successfully last year, collected approximately 50 percent of all healthcare activity across the state.
Maine, in fact, now has more than 800,000 individual records in its secure central repository, which accounts for about 67 percent of the state's population. Conveniently for the state, most of those people reside either in the southern end of the state or clustered elsewhere around larger communities.
HealthInfoNet expects to sign at least another 10 providers by year's end, said communications manager Amy Landry. But the relatively easy part of bringing providers into the network is over.
According to a survey completed last year by researchers at the University of Southern Maine's Muskie School of Public Service, 46 percent of Maine's ambulatory care providers do not have an electronic health record. Not surprisingly – and as in many other rural regions across the country – the majority of those providers are small and scattered across the state's more isolated counties.
In addition to being Maine's sole, state-designated HIE, HealthInfoNet is also one of the nation's 62 federally-funded Regional Extension Centers. So as it works to help providers who do have EHRs get connected to the Maine network, it also will be helping other providers make the perhaps more challenging transition from paper to electronic records.
City Lights: Bronx RHIO
For Maine healthcare stakeholders, the ultimate goal is to develop a single HIE that will connect all of Maine's 1.3 million residents – who also happen to live in a state that is 97 percent forest. Such figures might bring a smile to the faces of participants in the Bronx Regional Health Information Organization (BronxRHIO), seeing as how that one New York City borough has a population of 1.4 million.
BronxRHIO already serves approximately 85 percent of the Bronx's medical community, said Charles Scaglione, BronxRHIO's executive director.
In the Bronx, most doctors are employed by institutional providers such as hospitals, community health centers, long-term care providers and home care providers. Naturally, the organization is looking to continue expanding its membership, but Scaglione said a decision was solidified at the beginning to "make sure we have enough data in the system to make it worth the (smaller providers') time to come look."
BronxRHIO got its start in 2004, with initial funding coming from that year's Health Care Efficiency and Affordability Law (HEAL) for New Yorkers Capital Grant Program. Unlike HealthInfoNet, BronxRHIO is not New York's only HIE. Rather, it's one of a dozen RHIOs covering the state, from Buffalo to Long Island.
Currently, cross-RHIO exchange of information is not possible, but Scaglione said BronxRHIO is working with the four other RHIOs in the New York City area on planning an information exchange pilot project.
Scaglione pointed out the irony that while the Bronx has a largely "poor population with high rates of bad health," its preponderance of large, institutional providers gives it an "incredibly high EMR penetration rate."
Indeed, BronxRHIO doesn't encounter many providers who haven't moved from paper records to EHRs, and most of the large BronxRHIO members have the capability for patient portals, but Scaglione said discussions are still underway as to whether patient portals should be specific to institutions or shared across the BronxRHIO network.
Perhaps the largest single difference between BronxRHIO and HealthInfoNet is that the Bronx organization is involved in broader, regional and national health information network discussions by dint of its membership in the statewide New York eHealth Collaborative (NYeC). A public/private entity, NYeC received and administers federal HITECH funding, and to it falls the task of developing connections between New York's RHIOs and HIEs in other states and regions.
CONTINUED ON NEXT PAGE
Crossing State Lines
Some HIEs have the luxury of gathering a state's healthcare providers into one statewide network before they have to worry about connecting to providers across borders, but things aren't that simple in New York.
As NYeC Executive Director David Whitlinger points out, given physician referral patterns in downstate New York, where patients may live in New York but see doctors in New Jersey or Connecticut, there is already a need for patient information to flow across state lines.
New York "is one of the few states that has the unique challenge of stitching together a large number of HIEs into a consistent statewide network," Whitlinger said.
Still, by the time New York's dozen RHIOs have connected to form one statewide system – a goal Whitlinger says will be reached by the end of 2012 – many of the technical issues are expected to be resolved, thereby simplifying efforts to extend the network connections to other states.
"State leaders working on an HIE agenda understand that the challenge they face is finding a modern, appropriate way to deploy technology" to build successful interstate exchange networks, said Lynn Dierker, senior program director at the National Academy for State Health Policy.
Flexibility is key, she said, as these networks require simultaneous progress at the local, state and federal levels, and "state HIEs need to think collaboratively and make connections" in a political and financial environment that is constantly changing.
Indeed, connecting Maine providers to each other has been, and will continue to be, HealthInfoNet's primary charge, but it is arguably only half of the NwHIN vision. The other half involves getting those providers who are connected to each other within Maine to be equally connected to providers in other parts of the country.
"When you cross state borders, you run into what other state legislatures have established as their legal fabric of trust," said Shaun Alfreds, HealthInfoNet's COO. "It's going to be very challenging for HIEs to connect with one another because of the differing state laws and regulations regarding the consent for access to, and use of, personally identified health information."
To that end, Maine is working on two other NwHIN-related efforts. The first involves the Direct Project, the public-private initiative focused on enabling providers to send patient information directly to other, known providers in a simple and secure environment. Alfreds says HealthInfoNet has agreed to help facilitate Direct Project-related discussions between Maine providers and providers in other parts of the country.
The other project involves getting Maine plugged into the Aurion software project, formerly known as Connect, and designed to enable state-level entities to interface with federal healthcare-related agencies such as the Veterans Administration and the Social Security Administration.
According to Alfreds, HealthInfoNet is planning a pilot project this summer, in which it will use the Aurion system to interface with the VA.
CONTINUED ON NEXT PAGE
Needed: Funding and Policy
Despite their differences, HealthInfoNet Maine and BronxRHIO share the same uncertainty about their financial future. Both are funded, at least in part, by federal grants, but that alone is not a sustainable model.
Landry said subscriber fees constitute about half of HealthInfoNet's financial support. As for what happens when grants stop funding the other half, she said "discussions are under way."
At BronxRHIO, meanwhile, a mix of federal, state and local grants make up about two-thirds of funding, with the rest coming from membership dues, – an approach Scaglione said will serve the organization for the next five years.
Beyond that, he anticipates continuing with grants as an inevitable part of the mix, but said the organization will also move toward a service-based model of membership, with dues based (in addition to the size of a provider) on what specific services the institution wants BronxRHIO to provide.
As the future financial models, critical services, standards and policies by which the NwHIN will ultimately operate continue to take shape, in simplest terms the NwHIN can be boiled down to getting one provider connected to another, and then to another, and then another – until it's time to plot yet again a new and different national map.
CONTINUED ON NEXT PAGE
Q&A: CHIME's Sharon Canner
Sharon Canner has a unique and practical purview into how the Nationwide Health Information Networkis progressing. As the senior director for advocacy programs, she leads the government affairs function at the College of Healthcare Information Management Executives (CHIME), overseeing CHIME's CIO StateNet and its Policy Steering Committee.
Government Health IT Editor Tom Sullivan interviewed Canner about the obstacles along the road to a grand NwHIN vision, uncharted future funding for the HIEs and RHIOs that serve as the foundation to NwHIN, and what it will take to make nationwide health data exchange a reality.
Q: RHIOs and HIEs are emerging largely isolated from other RHIOs and HIEs, save a few examples. … Is this inhibiting or slowing the growth of NwHIN?
A: Many simultaneous forces in play have implications for health information exchange, some of which are occurring outside local and/or state-based RHIOs and HIEs, which could potentially connect with the Nationwide Health Information Network. For example, the Care Connectivity Consortium members – Geisinger Health System, Kaiser Permanente, Mayo Clinic, Intermountain Healthcare and Group Health Cooperative – have joined together to securely exchange electronic health data. Development of standards, protocols and best practices will continue to evolve in this dynamic health IT environment. Having pockets of HIEs emerge from various stakeholders in different parts of the country does not necessarily inhibit NwHIN, but depending on what practices emerge from these, NwHIN may look slightly different than originally envisioned.
Q: There is some regional and statewide health information being exchanged, but what will it take to for that to really happen on a nationwide level?
A: To meet the immediate needs of providers, ONC launched the Direct Project in March 2010 to facilitate one-way communication between providers. Likewise, HHS is supporting the open source (Aurion) platform that allows organizations to exchange health information using recognized interoperability standards. But for these projects to morph into NwHIN, ONC and HHS must focus more policy and resource levers to incent development, agreement and adoption of national standards. With so many pieces evolving, coordination and attention to the primary objective of NwHIN – exchange of data for better patient care – must be kept at the forefront.
Q: The BronxRHIO and Maine's HealthInfoNet, among others, are uncertain where future funds will come from. If these centers don't succeed, what becomes of the NwHIN model?
A: Sustainability has long been a major hurdle for health information exchange. State plans should include provisions for ongoing sustainability, ensuring funding is applied equitably. For example, MedAllies (Hudson Valley, N.Y.) is a unique health information service provider specializing in EHR implementation in addition to providing the infrastructure to enable the secure sharing of medical information among providers. Since 2001, MedAllies has successfully managed the Hudson Valley Health Information Exchange, which connects multiple hospitals and labs to a common technology platform used by over 500 physicians to manage over 250,000 patients. In addition to governance and technical standards currently being tested across the states, funding strategies can be expected to emerge. HHS and ONC will likely do more in the way of identifying and evaluating financial models and piloting promising new structures.