Lessons from the HIE Front

For every health information exchange and regional health information organization, there are hard lessons being learned as the initiatives struggle to start operations and grow.

For Liesa Jenkins, executive director of Kingsport, Tenn.-based CareSpark, the big lesson is that the Internal Revenue Service has stymied other federal government efforts to promote HIEs and RHIOs as the backbone of a national health information organization.

For more than three years, CareSpark has been waiting for the Internal Revenue Service to rule on bestowing 501(c) not-for-profit status on the organization. Such status can aid HIEs and RHIOs in getting grant funding from corporations, foundations and other entities. “What is it that the IRS wants?” Jenkins asks. “We still do not have our 501(c) designation after three-plus years.”

CareSpark comprises hospitals, physicians, insurers, public health departments and other stakeholders serving 17 counties in Tennessee and Virginia. The HIE filed its application for not-for-profit status in August 2005, and Jenkins has asked for a status update monthly since December 2005. That’s when the application was routed to a specific IRS office in Washington that was going to handle such requests. “They told us in June 2007 that they had all the information they needed, but had to create policy for handling RHIOs, with no timeline.”

The region’s senators and representatives have had no better luck getting the IRS wheels turning. Consequently, CareSpark has lost grants it could have gotten and watched other grant opportunities come and go, Jenkins contends. “I want government to get out of the way and let us do what we need for our communities. The government is a barrier. I don’t know why an application for a RHIO would be treated differently than other non-profit organizations.”

For the Ann Arbor Area Health Information Exchange, the big lesson learned is that physicians are not adopting electronic health records systems as quickly as envisioned. In part, that’s because the region’s hospitals haven’t offered to subsidize ambulatory EHR costs.

The physician-driven HIE started with four group practices that use the same EHR system and access data from two hospitals.

Now, the HIE is testing a Web portal to enable other physicians, including those without EHRs, to participate. “We’re starting to work with small practices to see if they’re going to bite on that,” says Carlotta Gabard, executive vice president and director.

Other HIEs and RHIOs have learned that consensus over data sharing issues is hard to achieve even when rivals have historically cooperated in other regional projects and have developed trust. Another lesson being learned is how to comply with privacy laws in an electronic, HIE environment.

But among data exchange veterans, the most commonly cited lesson is just how tough it is to establish HIEs and RHIOs. “I wouldn’t say there’s been anything in these projects that has been particularly easy,” says Irene Koch, executive director of the Brooklyn Health Information Exchange. “I think most people involved would say it’s the hardest thing they’ve done in their lives.”

Seeking Viability

Some HIEs and RHIOs are finding the toughest lesson so far is the difficulty in establishing a sustainable business model.

“Sustainability is still something that needs to be addressed,” says Daniel Porreca, executive director of HEALTHeLINK serving Buffalo and eight Western New York counties. “We will create value; the challenge is demonstrating and quantifying that value.”

The HIE to date has received matching grants from the state, but the last grant ends in mid-2010. While Porreca has commitments from participants to continue, he also knows that reaching consensus on a sustainable business model has to be a priority. “I do have a sense of urgency and the timetable would be before the end of this grant period.” Shareholders, he believes, also share the urgency.

HEALTHeLINK is not alone in its search for consensus on a business model. The Brooklyn Health Information Exchange is another of several HIEs that have received start-up funds from the state. But the grants run out in mid-2010. The organization is working on various models. “The challenge to doing sophisticated financial planning is that it is very time consuming,” says Koch, the executive director. “There are many other competing priorities.”

The Indiana Health Information Exchange in Indianapolis went live in late 2004 and became financially sustainable – cash-flow positive – two years later, says J. Marc Overhage, M.D., president and CEO. “My CFO may argue we’re still not able to generate cash for new investments,” he concedes.

One of the challenges of HIEs is recapitalization, Overhage says. Most HIEs, he notes, are not-for-profit organizations so they don’t have access to Wall Street and private investors. “Squirrel some revenue away and use grants to capitalize new initiatives,” he advises.

IHIE charges transaction fees for its core clinical messaging service to 38 hospitals and just over 10,000 physicians, as well as labs and radiology and imaging centers. The initiative recently launched an insurer-focused disease management service using a grant to get the program running. Insurers pay fees on a per member per month basis. Seven payers have committed to the program and five were live in December.

A Working Model

Organizations still searching for a sustainable business model may want to consider a trip to Cincinnati to visit the folks at HealthBridge.

The health information exchange launched in May 1998 and today serves 29 hospitals, 4,600 physicians, 17 public health departments and other provider sites in the region. HealthBridge started with a Web portal to give physicians access to patient data in hospital information systems. “That gave a huge benefit to doctors and the hospitals,” recalls Robert Steffel, CEO. “It leveraged existing systems to give value immediately and started building trust among competing hospitals.”

That success paved the way for future expansion, such as contracting with San Jose, Calif.-based Axolotl Corp. for a communitywide clinical messaging system.

HealthBridge started with loans from five delivery systems and two insurers. The organization is still repaying the loans with monthly installments until December 2014. The loans underscored the HIE’s leaders’ fiduciary responsibility to make it work. Grants seed some projects, such as electronic prescribing, but have never been used as operating revenue, says Keith Hepp, vice president of business development at HealthBridge. “We operate as a business,” he adds. “We have to demonstrate value and return on investment before introducing new services.”

Under the HealthBridge model, hospital systems pay a monthly subscription fee, ranging from $4,000 to $40,000 based on the size of annual expenses, to send all transactions through the HIE. Ambulatory facilities pay a transaction fee. “Our total budget works to 12 cents per result delivered,” Steffel says. “The average without HealthBridge is 75 cents.”

Won’t Work Everywhere

HealthBridge’s model may not work everywhere, notes Steffel. The close proximity among participants in Cincinnati’s medical service area means that participants interact every day, Steffel notes. So when the hospitals decided on what to do, the exchange set a standard for the market. Hospitals, for instance, agreed on standards for data sent through the clinical messaging system. This has enabled the community to send clinical results from hospitals and labs directly to physicians’ electronic health records systems in a single feed.

But a state-wide data exchange would represent a very different market. The HealthBridge model is unlikely to work at the state level except in very small states, Steffel adds. HealthBridge serves parts of Ohio, Kentucky and Indiana.

In the past year, two other health information exchanges collaborated with HealthBridge as the veteran HIE starts to outsource its services. HealthBridge provides Bloomington, Ind.-based HealthLINC and Springfield, Ohio-based Collaborating Communities Health Information Exchange with technology infrastructure and assists with strategic planning. But the HIEs have independent governance and physician office support. HealthLINC was live three months after contracting with HealthBridge; CCHIE was live after four months, Steffel says.

For 15 years, the 16 hospitals of the Western North Carolina Health Network have worked together on common issues. Among other initiatives, CIOs shared Y2K ideas, and the hospitals instituted group purchasing and quality benchmarking programs. Plus, the hospital CEOs meet each month to discuss issues.

This historical relationship and level of trust enabled formation of the regional HIE, called WNC Data Link, says Gary Bowers, executive director of the network. But it still took eight months of on-and-off negotiations to decide on a patient participation model.

When dealing with 16 independent hospitals and their CEOs, boards, attorneys, HIPAA privacy and security officers, clinicians and others, “that is difficult,” Bowers notes. “We took it slow and didn’t push for a rapid final decision because so many groups had input.”

In the end, WNC Data Link adopted an opt-out policy. This means a patient’s data can be shared through the HIE unless the patient expressly does not want to participate. In contrast, an opt-in model means patient data could only be shared with express permission, a step that would require enrolling patients. The hospitals, attorneys and physicians agreed to the opt-out model because the HIE is used only for continuing care and treatment, Bowers says. It has no central data repository and conducts no data mining.

Technology Challenges

To some degree, WNC Data Link participants found the information technology components that support data exchange easier to implement than expected. For its platform, the HIE uses portal software from Birmingham, Ala.-based Medseek Inc., and project management and hosting services from IBM Corp., Armonk, N.Y.

Other I.T. aspects weren’t so simple. While the vendors strongly encouraged that the portal be phased-in, HIE administrators initially wanted a big-bang approach. “We initially thought this is such an important project and we have these grant deadlines, that we’ve got to push,” Bowers says. “But the hospitals pushed back. We learned ours was not the top priority.”

Some hospitals, for instance, were changing their core information systems and had to delay participation in the HIE. “We had to be very flexible to work around hospitals’ own I.T. projects,” Bower adds. “We didn’t want to see this project interrupt what was already on their plates.”

So the physician portal was phased in starting in 2006 and finishing last September. The portal gives physicians access to patient histories; medications; allergies; radiology and transcribed reports; lab results; and primary care and emergency contacts.

The HIE by early December had nearly 5,000 monthly log-ins from 330 unique users. Emergency physicians are the biggest users, but word-of-mouth is spreading use, says Dana Gibson, project director. The long-term goal of WNC Data Link is to have a longitudinal record for every patient in Western North Carolina.

One More Lesson

Gibson has one more lesson for others who want to build a HIE: “An ongoing challenge is that hospitals are constantly restructuring. The I.T. folks you work with today may not be the ones you work with tomorrow. So you need to constantly educate them.”

The Brooklyn Health Information Exchange also found its share of technical issues. For instance, underlying standards for establishing a virtual private network are the same, says Boris Mamkin, project manager.

But within every sending organization, the network architecture and hardware are different. That means the hardware devices, even though they are using the same protocols, operate differently, Mamkin explains. “So you need specific configurations for every stakeholder. That was our challenge.”

By their nature, health information exchanges must deal with many novel issues that routinely are accomplished in a paper world but need new processes in an electronic environment.

For instance, various state laws in New York, including one regarding the sharing of HIV information, require written patient consent for providers to disclose sensitive health information. “Disclosure comes at the point of access so we have to translate those privacy rules into this new landscape,” says Koch of the Brooklyn Health Information Exchange.

Under its process, when a patient comes to a provider organization, the patient is asked if he or she consents to the provider accessing data, including sensitive information, via the HIE. The answer-yes or no-is entered into the organization’s registration system and transmitted to the HIE’s platform software. The software grants or denies access pursuant to the patient’s wishes.

If a patient’s preference is unknown, access will only be granted in an emergency situation under special “break the glass” procedures. Patients can change their consent status at any time. Even veteran initiatives with a high level of trust among participants can find it difficult to expand services.

Since 1994, the Utah Health Information Network has transmitted claims and related financial/administrative transactions among hospital, physician and payer stakeholders.

Three years ago, the group started thinking about adding clinical data and becoming a clinical health information exchange. But accomplishing that took longer than envisioned for several reasons.

Salt Lake City-based UHIN has never relied on grant funding. “We’re not going to do anything unless the community sees enough value to pay for it on a long-term basis,” says Jan Root, executive director.

Building the Business Case

So for three years, she and others have built the business case for each stakeholder group to adopt a clinical exchange. “Utah is a very conservative state and my board is almost all businessmen,” Root explains. “It’s taken a long time to build a sustainable business case with evidence.”

One piece of evidence that took time to find was a successful HIE using technology to enable a communitywide virtual health record. UHIN is basically an electronic post office delivering envelopes of data. But the post office does not support a virtual record of all care given a patient by multiple providers.

In early 2007, Root visited the Quality Health Network in Grand Junction, Colo. The network supports clinical messaging, a master patient index and a records locator service. After deciding to copy the Colorado network’s model for clinical data exchange, UHIN issued a request for proposals for a vendor to build the platform in January 2008 and received 22 responses. Costs varied dramatically between the vendor offerings.

In December, UHIN expected to contract with a vendor to build its clinical platform. The network expected to start clinical data exchange in early 2009.But the deepening financial crisis and recession could alter plans, Root says.

Utah is dominated by small businesses; the state government and Intermountain Healthcare are its largest employers. Some of the small businesses are reducing or dropping health care coverage. UHIN stakeholders are losing revenue as patients postpone elective surgeries. Some stakeholders are asking why UHIN is starting a new project at a time of financial bleeding.

Root counters that stakeholders can wait two years or start cutting costs now with a clinical data exchange. So far, that argument is working, but the support might not last. “They are on board, but the ground may be shifting below our feet,” Root says.

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