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Maine HIE sets national example for patient, provider participation

As U.S. states struggle to build health information exchange, Maine's got a federal-funding jump start. Its leader shared trials and tribulations at the AHIMA 2011 meeting.

Health information exchange got its jump start with funding from 2009's HITECH Act, which mandated that each U.S. state and territory name a health IT coordinator as part of the HIE construction process. While all state HIEs are under development, some predate the HITECH Act.

Few, if any, have progressed to the level of the Maine HIE, which launched in 2004 and kicked into overdrive during the last two years thanks to federal Beacon Communities grant funds, a separate part of the HITECH Act.

In fact, Maine HealthInfoNet boasts a majority of the state's patients in its system, said Devore Culver, executive director of Maine HealthInfoNet. Culver, who had previously served as Eastern Maine Medical Center's CIO for two decades, shared a progress report to health information managers attending the American Health Information Managers Association 83rd Convention and Exhibit in Salt Lake City.

Fundamentally, Culver said, HIE is a disruptive innovation. "What we're trying to do here is overcome what [have] been traditionally serious holes in our current approach to coordination of care."

Filling those holes involves new technology and cultural shifts such as retooling relationships between stakeholders in Maine HIE, Culver said. This includes getting hospitals that might compete with one another to share patient data for the benefit of patients who get services from both.

More than just a record-finder system, Maine HealthInfoNet is a centralized HIE porting data from all participating care providers directly into a physician's EHR system, so it's all viewable at once  -- not quite real-time, but within "two to three minutes" after a record is uploaded. Under state law, it also must report 72 diseases, such as E. coli, Tuberculosis, Lyme Disease and food poisoning, to the Maine Center for Disease Control and Prevention (CDC). Currently, Culver said, the Maine HIE has the capability of reporting 30 of those electronically.

Of the state's 1.3 million year-round residents, more than 900,000 are accounted for in the Maine HIE as of the end of September. (The population figure excludes out-of-state property owners with vacation homes on the well-off coast of Maine, an otherwise mostly poor, rural, elderly state.)

Maine HealthInfoNet's participation goal, Culver said, is getting 80% of full-time residents in the system. 

Health information exchange benefits becoming clearer

"The one thing that distinguishes HealthInfoNet today from the rest of the country is that we're just a teeny bit further ahead of everybody else in terms of standing up and delivering the statewide construction," Culver said. "The adventure's just beginning. Getting the exchange stood up, getting it populated, getting it connected is kind of like the appetizer. The real question is what the main course will do."

Patients are seeing the results quickly, with fewer repeated tests (and the inconvenience associated with them), less paperwork to fill out, and better coordination of care. It starts with their primary care physician, who gets the expanded view of information from all caregivers. The cost benefits spread out from there. Just as insurers pay for fewer tests -- and fewer physician visits from the resulting bump in quality of care -- patients also miss less work and have fewer co-pays.

In 2012, the HIE plans to open a patient portal, which Culver hopes will further engage patients.

Meanwhile, physicians tell the state HIE that they're making better care decisions because they can see a more complete picture of the patient's needs close to the time of care. They confirm with Maine HealthInfoNet that they are ordering fewer repeat tests and, in one instance, access to patient data in the HIE saved a patient's life.

Maine HIE maintains patient opt-out policy

For all the complex interoperability wrinkles to be ironed out among the 39 hospitals and 3,500 providers hooked into the Maine HIE -- as well as other entities such as the state CDC -- Culver said building trust among the stakeholders (soon to include labs and pharmacies) was much more important in its success than the technology piece.

Doctors and hospitals cannot look in on their competitors and aggregate data such as market share of a region or other specifics based on a diagnosis or demographics, he said. "It's not organized around that. It's organized around the individual."

The adventure's just beginning. Getting the exchange... connected is kind of like the appetizer. The real question is what the main course will do.

Devore Culver, executive director, Maine HealthInfoNet

Knowing that has made it easier for physicians to join the HIE and share data from their EHR systems. "These things do not work well if you do not have a foundation of trust, said Culver, who argued before the Maine legislature to keep the patient HIE opt-out policy in place when lawmakers were considering making participation compulsory for all residents.

Maine HealthInfoNet has built its trust through a very detailed privacy and security policy that balances legislative mandates with patient rights, and uses creative ways to satisfy both.

For example, the following occurs when a patient who has opted out receives a disease diagnosis that must be reported to the Maine CDC:

  • The physician still transmits the record to the HIE.
  • The HIE's rules engine detect there was a public health event that needs to be passed on to the CDC.
  • The same rules engine immediately deletes the record before it can enter data storage.

The Maine HIE reviews and tweaks its privacy and security policy annually, with input from a consumer advisory board that serves as "the primary agent who engages in this review process," Culver wrote in an email to

As of late September, 6,751 patients had opted out, though some opted back in when they realized their physicians couldn't access data from other caregivers. Although the organization has the means to track trends in demographic data, Culver said it's tough to pinpoint what distinguishes or motivates those who opt out. Maine HealthInfoNet has found that, so far, women opt out more frequently than men; informal feedback indicates that some fear exposure of health information to an employer or insurer.

While it might be interesting to run data analytics on the people who opt out to see if there's any correlation to, for example, a desire to keep behavioral health or substance abuse treatments private, that's impossible. "We expunge the clinical data within minutes of an opt-out decision being established with the exchange and do not have the diagnosis data to refer back to retrospectively," Culver wrote.

Correction: The original version of this story misstated that Maine Medicare and Medicaid recipients could not opt out of HealthInfoNet. The story has since been updated.

Let us know what you think about the story; email Don Fluckinger, Features Writer.

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