Health Information Exchange: Patient Data on the Move

Healthcare has tried and failed several times before to build sustainable, robust IT networks to share patient records, medical histories and test results among multiple facilities and caregivers across similar geographies. At last, we have success. Health information exchanges are thriving—with 57 now established across the U.S. (40 of which that have achieved tangible cost savings)—and meeting their mission to unite, overcome competitive pressures and issues, and share pertinent patient data at the point of care to improve the lives of people.

Health information exchanges work. Oncologist C. Eric Hartz, MD, CMIO of Eastern Maine Medical Center (EMMC), immediately found value in HealthInfoNet with the first patient he saw on the first day the statewide health information exchange went online this summer. The patient had metastatic colon cancer and his bile passage was blocked. The man had had a stent inserted at an ambulatory surgery center, but returned to the Bangor hospital for follow-up care.

While driving in, the patient was listening to a radio report about the HealthInfoNet launch and asked Hartz if he could pull up the surgical report from the other facility. It used to take days or weeks to get such reports from outside the organization. But this time, Hartz opened the EMMC electronic medical record, logged into HealthInfoNet and within seconds was reviewing the surgeon’s notes to help assess the patient’s condition. “We make decisions from 20-minute or half-hour visits with patients, and we need as much information as possible to make those decisions,” Hartz says.

The idea of interoperable networks for electronic healthcare data is nothing new. Community health information networks (CHINs) came and went in the early 1990s. After EHRs got on the national agenda in 2004, regional health information organizations (RHIOs) sprouted by the dozen—although many went out of business for lack of a sustainable business model.

The nomenclature du jour is health information exchange (HIE)—a noun for the switchboards intended to route patient records, medical histories, test results and other data between physicians and hospitals, and a verb to describe the transmission of that data. It may just be a catch phrase, but, as the Maine example shows, there are signs that more than just the name has changed.

A recent survey from the eHealth Initiative, an advocacy group for better healthcare via information technology, found a sharp increase this year in the number of HIEs—to 57 from 42 a year ago—that have moved from planning stages to being operational with the actual exchange of data (see “How Health Information Exchanges Stand Up to Be Counted” on next page).

Maine’s HealthInfoNet actually is the follow-on to a CHIN that failed in the late 1990s. “The technology wasn’t ready and the people weren’t ready to change,” explains HealthInfoNet Executive Director Devore Culver, who was CIO of Eastern Maine back then. That organization was not ready for the transformation from paper to EHR, he says. Since then, Culver says, “The need to do something has changed.”

And the momentum likely will only build with the February passage of the American Recovery and Reinvestment Act (ARRA). The latest version of proposed rules for the EMR subsidy program would ratchet up the standards for health information exchange in 2013 and again in 2015. (See “Meaningful Discussion on Meaningful Use: What Do You Need to Do Now?” on page 14) “The federal law has changed the game,” Culver says.

Hartz is excited about the possibilities for delivering a higher quality of care and decreasing duplicate testing. “The communication is just going to be so much better,” he says. The oncologist believes that it means a lot to patients that they don’t have to repeat information or fill out the same forms each time they encounter a caregiver.

“We’re starting to work on other elements,” Culver adds. For example, he’s learned that emergency physicians want to be informed if there’s other information available when a patient shows up for treatment.

“The most important thing is that they’ve identified a need in the community,” Jennifer Covich, interim CEO of the eHealth Initiative, says about HIEs. That seems to be a common thread among the development and operation of many exchanges these days.

“We’re looking at what clinical data physicians want,” says Laura Landry, executive director of the Long Beach (Calif.) Network for Health, an organization that currently is running a pilot program to connect the emergency departments at two hospitals in Los Angeles County. She envisions the network as kind of a smorgasbord of data, where users can choose only the bits of information they need and bypass what they don’t. It also will help providers with quality assessments they’ll need for outcomes-based reimbursement in the future.

The Massachusetts eHealth Collaborative started with much fanfare in 2004, bolstered by a $50 million pledge from Blue Cross Blue Shield of Massachusetts to provide EHRs and two years of connectivity in three test markets.

The Rhode Island Quality Institute was founded in 2001 by Sen. Sheldon Whitehouse (D-R.I.)—then the state’s attorney general—with the mission of improving quality of care. “We chose the high-leverage route of IT,” says Institute President and CEO Laura Adams.

Down south, the Louisiana Rural Health Information Exchange (LARHIX), started as a telemedicine network to improve rural patients’ access to specialists. But organizers realized even before the 2007 launch that the remedy for long waiting times would create another problem: specialists having to see patients via telemedicine before existing medical records got to the hospital. “It would be kind of hit or miss for patient records to wind up in the hands of the specialist in time for the consultation,” says IT Director Jamie Welch.

It was decided that an information exchange could automate the whole process, so LARHIX started with both telemedicine and, whenever possible, a longitudinal EMR. Specialists at Louisiana State University Health Science Center in Shreveport have all available data to make decisions about patients at 24 remote sites.

The results have been astounding: LARHIX has resulted in a 93 percent drop in duplicative testing at participating hospitals, in part because an electronic master patient index (MPI) helps track which patients have been to multiple facilities.

What’s changed: Funding & experience

Two key factors in the better track record of RHIOs and HIEs of late are funding and the wisdom of experience. “Early adopters didn’t have any examples to follow,” Covich says.

Some early adopters, notably HealthBridge in the Cincinnati, Ohio, area and the Indiana Health Information Exchange, have found success by winning buy-in from multiple stakeholders, leadership from a prominent institution and a long-term funding plan. “You can’t force this, just like you can’t force an EHR on a doctor,” says Covich.

Then there was the Santa Barbara County (Calif.) Care Data Exchange, a high-profile project that became the poster child for RHIO failure after it shut down at the end of 2006 due to numerous implementation delays and the inability to convince participants to help fund the network beyond a $10 million grant from the California HealthCare Foundation. Once that money was gone, so was the RHIO. “Everybody has to pay a little bit. That’s the Santa Barbara lesson,” says Landry.

Lack of an MPI also proved to be an issue in Santa Barbara. Plus, few participating institutions had EHRs, making it nearly impossible for a RHIO to provide useful clinical data to enrolled doctors. While EHR adoption hasn’t exactly boomed since 2006, a critical mass of hospitals at least has made strides in that direction.

The stimulus promises to accelerate the change. Of the $2 billion in discretionary funding allocated to the Office of the National Coordinator for Health Information Technology (ONC), $100 million will be funneled to the states for HIEs. National Coordinator David Blumenthal, MD, joined Health and Human Services Secretary Kathleen Sebelius and Vice President Joe Biden in August to announce that the federal government will spend $564 million to encourage HIE and build the Nationwide Health Information Network.

“It’s a totally different environment now,” Covich says. “We can definitely cite a group of folks who know how to do it.” These are organizations that have figured out governance, engagement of stakeholders to improve operations for all and, yes, the money side, too.

“The CHINs’ problem was governance,” says Landry. “RHIOs didn’t really address local needs.” In Long Beach, providers really were missing important clinical data. “You only fix what’s a pain point,” she advises.

Because of his earlier experience with the CHIN, Culver admittedly was skeptical when he joined HealthInfoNet in 2006. “But the providers came together and decided on a central data repository,” Culver says. “They decided to stop competing on information.” In fact, they favored co-mingling records for the greater good.

Success stories

Given that healthcare is inherently a local pursuit and that health information exchange largely remains in the experimental stage, there is no one-size-fits-all model for HIE.

The Rhode Island Quality Institute (RIQI) took several years to plan its governance structure, including successful lobbying for a state privacy and security law that is stronger than HIPAA. Partners include the only two integrated delivery networks in the smallest state (48 miles north to south and 37 miles east to west), as well as major payers.

The HIE has been around for nearly nine years, but only this fall will data begin flowing across the network—in the form of an EHR aggregator pilot program—transferring records with 10 to 12 data elements each in the Continuity of Care Document format. Pharmacy giant CVS Caremark, which is headquartered in Woonsocket, R.I., gave a $2.5 million grant to the exchange to launch the aggregator. Other funding sources include two major insurers.

The HIE also has a $5 million Agency for Healthcare Research and Quality grant to set up transfer of medication records and lab results. RIQI will charge partners an assessment on claims to spread out the cost burden and to generate operating revenue once the AHRQ grant runs out. Adams is counting on federal stimulus funding to help providers adopt EHRs.

To win over the public, RIQI has what Adams calls “trust levels”: categories of privacy for consumer information: emergency only; restrictions on which doctors and hospitals can see their records; and open access to all providers involved in their care.
Maine-based HealthInfoNet has a 19-member board that represents five major stakeholder groups: hospitals, physician practices, commercial insurers, government and consumers. It’s a 501(c)(3) not-for-profit organization, a popular status for HIEs and RHIOs that want to remain independent of competing healthcare entities.

The demonstration phase, which started in February 2008 and is expected to run through next summer, costs $6.5 million. Some $3 million of that total came from the private, not-for-profit Maine Health Access Foundation, set up when the state’s Blue Cross and Blue Shield affiliate demutualized.

“Ultimately, we put a ton of work into standardization,” says Culver. “We focused very hard on lab results, a little less on diagnostic reports.” All lab results are coded to LOINC, while the exchange follows Snomed CT for reporting whenever possible.

The Massachusetts eHealth Collaborative essentially has set up three separate RHIOs. In the North Adams, Mass., network, each physician pays a monthly fee to support the EMR and for health information exchange. Of the 45,000 residents in the service area, 41,000 have opted into the exchange after the first two years.

Newburyport didn’t come online until September 2008, and is still working on a long-term revenue source, since start-up funding runs for another year. The future of the Brockton exchange is unclear, due to technology problems.

There is a data repository for each of the three HIEs, plus a central clinical repository for quality measurement purposes that launched last year. “We strip off all the patient names and make sure it’s encrypted,” says President and CEO Micky Tripathi, PhD. By late summer, the repository contained about 400,000 data items, including medication lists and lab reports, from Newburyport and North Adams, and gets 50,000 new items per month.

In Louisiana’s LARHIX, a registered nurse in Shreveport coordinates each case and documents time and monetary savings by not having to send physical documents to the remote sites. Welch says having some hard data on the early successes of LARHIX helped land a bevy of new funding by convincing state lawmakers to treat the network as an investment in public health infrastructure. In June, the Louisiana State Legislature passed a bill appropriating $5 million for a state health IT loan fund, which, thanks to a 5 to 1 federal match authorized by the economic stimulus, will swell to $30 million. Since then, the state has allocated another $1.9 million for network maintenance.

Plans call for adding a patient portal and functionality for chronic disease management, including dashboards for cancer and diabetes care. “We also will add a minimum database for disaster recovery,” Welch says. This will contain certain demographic information, plus allergy and medication lists.

LARHIX will use some of the new state money to add 13 stops on its mobile mammography routes and install telemedicine equipment at 41 additional sites. “The telemedicine is what draws people in and the data exchange is kind of the icing on the cake,” Welch says.

The challenges ahead

Like any work in progress, challenges remain. In Long Beach, data currently flows only from demographic sources. “It’s not a live network in clinical settings,” Landry says.

“We’ve not succeeded at all in the area of allergies,” admits Culver. “That’s been an absolute terror.” For example, without a standardized system for entering data, “beesting” and “bee sting” are considered different.

“One of the questions we’re all trying to answer from a national perspective is: Do these systems save any money?” Tripathi says. Massachusetts should have some results to report by the end of this year.

The top three challenges for the Rhode Island exchange have been privacy and security, consumer involvement and, of course, long-term financing. RIQI worked with Boston Consulting Group to come up with what they believe is a sustainable business model. The consultants’ report found that participants could realize total returns of $108 million on a $3 million investment, something that the eHealth Initiative noticed. “The top issue changed to privacy and security after the eHI report,” Adams says.