Diaspora dispatches

Editor's Note: This story was updated at 2:20 p.m. Dec. 21, 2005, to correct the misspelling of Ina Kichen's name. The story incorrectly had it as Kitchen. We regret the error.

Two days after Hurricane Katrina battered the Gulf Coast, Dr. Julie Boom, medical director of the Houston-Harris County, Texas, Immunization Registry, received news that Louisiana evacuees would begin to arrive in her area the next day, the start of a nationwide diaspora of almost 2 million people.

Boom said she knew those displaced people included thousands of children who would need painful and costly immunization shots before they could attend school in Texas unless she could access their Louisiana records.

Boom asked Scientific Technologies, a company based in Tucson, Ariz., that supports the Immunization Registry and the Louisiana Immunization Network for Kids Statewide (LINKS), if the company could help her connect to the Louisiana registry.

Boom's phone call began a sequence of events that led to the creation of a makeshift regional network of state immunization registries. In the following weeks, it linked to other electronic health record (EHR) networks that cross federal, state and local boundaries as far away as Alaska. Health information technology officials say Katrina relief operations show that a national EHR network is within reach if policy-makers are motivated to create one.

"Development of interoperable health records is not a technology problem but a bureaucracy problem," said Dr. Roxanne Townsend, Medicaid medical director at Louisiana's Department of Health and Hospitals. "Once people figure out a way to get beyond the bureaucracy, things can happen very quickly."

Blog lines

As the health care complications of the Katrina diaspora became clearer, Dr. Mark Frisse, director of regional informatics programs at the Vanderbilt Center for Better Health and a professor at Vanderbilt University, opined about the lack of preparation in his Web log.

"What would be the value to the millions of Katrina refugees if we had established a national health information infrastructure a decade ago?" he wrote.

Frisse, who is also director of Tennessee's Volunteer eHealth Initiative Regional Health Demonstration Project, said the lack of medication information on Katrina evacuees could result in a 5 percent medication error rate, which could lead to hundreds of life-threatening drug reactions.

Frisse said he sent those concerns and a call to action to about 30 people, including Dr. David Brailer, national coordinator for health IT at the Department of Health and Human Services.

Boom's request for access to immunization registries and Frisse's blog posting were catalysts for spontaneous health IT innovations. Within days, public health professionals nationwide could access immunization registries in Alabama, Louisiana and Mississippi. And developers quickly built a system that allows clinicians in all 50 states to access medication records for many Gulf Coast evacuees.

Overnight delivery

After Boom called Scientific Technologies, she discovered that the company's definition of quickly connecting the Houston and Louisiana immunization registries meant overnight. As Gulf Coast evacuees started to fill Houston's Astrodome Sept. 1, Scientific Technologies had already figured out how to link the registries, less than 24 hours after her first call to the company.

Boom said the Houston-Harris Immunization Registry, its Louisiana counterpart and Scientific Technologies programmers tested the links between the two registries during Labor Day weekend, and the "two systems properly joined and [were] ready to go live the Tuesday after Labor Day."

By that time, Boom said, health care professionals working in the Astrodome had wireless Internet access and could tap into the Louisiana registry. They accessed about 2,000 immunization records before Hurricane Rita forced officials to move evacuees out of the Astrodome the week of Sept. 18.

Boom said the registry also gave evacuees an important psychological boost by linking them to their lost past. "These people came here with nothing," she said. "By helping them see some of their personal information, we helped ease their loss."

Boom said the registry link also helped clinicians in the Astrodome and elsewhere determine that some evacuated children needed more immunization shots. They could treat those children on the spot. She never thought the registries could be linked so easily, she said. But "necessity drove it, and it was amazing to watch it happen."

The role of standards

Adherence to Health Level 7 standards by both the Houston and Louisiana registries eased the connection.

"The importance of HL7 standards was never more evident than during Katrina," Boom said, adding that "because each registry was fully HL7-compliant, this link was able to be made quickly and easily."

Mike Garcia, vice president and director of integrated health systems at Scientific Technologies, agreed that HL7 standards made it easier to link the Louisiana and Houston registries. "The HL7 transport methodology supports two-way data interchange using secure Web technology," Garcia said.

Once the company established links between the two systems, a user in the Astrodome could log on to the system and search the Louisiana system, housed on a combination of Hewlett-Packard Unix and Microsoft Windows servers located in Baton Rouge, which survived the hurricane unscathed.

As Katrina evacuees spread nationwide, health care professionals realized they needed links to state and local registries in Louisiana, Alabama and Mississippi.

Ina Kichen, research and development manager at the American Immunization Registry Association, said she told all association members in an e-mail to use Scientific Technologies as a broker to create links with the Gulf Coast registries. The company dedicated staff and resources to execute user agreements with the Gulf Coast states, set up accounts and provided about 15 minutes of training, Garcia said.

By mid-October, the association and Scientific Technologies had established a connection among all 50 states except the Louisiana registry, Kichen said. And registries in nine states; Washington D.C.; Austin, Texas; and Los Angeles had access to the Mississippi applied immunization database. Kichen added that 17 states had access to the Alabama registry.

By then, the registry system had responded to 17,000 requests for immunization records. Based on an estimated cost of $50 a shot and one shot per child, the network saved at least $850,000 in unnecessary shots, Boom said.

Unintended benefits

Garcia said the crisis helped break down perceived Health Insurance Portability and Accountability Act (HIPAA) and Privacy Act barriers. But it took a hurricane to do it. Garcia added that the scramble to establish post-Katrina registry links also focused on the need to convert all registries to HL7 standards. Eight states and Houston could use HL7 to perform two-way data interchange with the Louisiana registry, but the remainder had read-only access to those registries, Garcia said.

Ron Van Duyne, a public health analyst in the Centers for Disease Control and Prevention's Immunization Registry Support Branch, said the post-Katrina experience should encourage all registries to convert to HL7 as quickly as possible. Registries with HL7 access to Gulf Coast databases could not only access records but also create new ones in their own systems, Van Duyne said. But those with view-only access had to re-enter the data.

Van Duyne said linking registries after Katrina was an extraordinary occurrence that would not have happened without a disaster. It should spark more cross-jurisdictional links in the future. The quick work broke through bureaucratic inertia, which has foiled the development of such links, he said.

The Alaska connection

As Katrina evacuees migrated nationwide, more states added immunization registry links to care for evacuees, which reaped benefits as far away as Alaska. The state connected to Louisiana's registry in early October.

According to an e-mail message from Laurel Wood, Alaska's immunization program manager, an evacuee family had checked into an Anchorage clinic the same day Scientific Technologies had set up a link between Alaska and Louisiana registries. Within minutes, the Alaska registry retrieved immunization data on the family's three children, facilitating their entry to schools far from home.

Medication portal

The development of a medication Web portal for hurricane evacuees and refugees paralleled the immunization registry effort. After the storm hit, health officials at the Louisiana Department of Health and Hospitals used the information to help piece together medical records that doctors and nurses could use when tending to Medicaid patients in the Superdome and throughout New Orleans.

But this patchwork system could not handle the long-term needs of Gulf Coast evacuees, who were spreading to communities and clinicians nationwide. The day after Frisse sent an e-mail message to colleagues encouraging medical records assistance, Brailer hosted the first of a series of teleconferences that ran through the end of September. They focused on the speedy development of electronic health care systems for evacuees.

Participants included Brailer, his staff, medical professionals from the Defense and Veterans Affairs departments and the Gulf Coast states, and health care IT and pharmacy system vendors. Carol Diamond, managing director of health care programs at the Markle Foundation and an expert in developing electronic health care systems, also participated.

The group initially focused on creating an EHR and a nationwide evacuee medication database system.

Charlene Underwood, director of government and industry affairs at Siemens Medical Solutions and chairwoman of the Healthcare Information and Management Systems Society's EHR Vendors Association, said association members developed a proposal for an EHR designed for use in shelters. Navy Capt. Robert Wah, who at the time was director of information management and associate chief information officer of the Military Health System and is now Brailer's acting deputy, worked closely with Underwood on the medical record.

Alignment of stars

Vendors hesitated to support the EHR proposal when they realized the greatest need was for a medication database to help treat evacuees arriving at shelters nationwide, Underwood said. Diamond said 40 percent of evacuees were taking prescription medications before the storm hit, and many more needed new or additional medications afterward.

The development of the post-Katrina medication Web portal resulted from an alignment of the stars, Diamond said. It required linking information from three disparate sources on a scale that no one had ever attempted before. Officials needed to collect and combine:

  • Prescription records from SureScripts, which covers 23,000 of the country's 55,000 pharmacies, including major drug store chains and independent stores.

  • Similar information from RxHub, which electronically routes information on behalf of pharmacy benefit managers from doctors serving 150 million people to pharmacies nationwide.

  • Medicaid prescription information from Alabama, Louisiana and Mississippi. Gold Standard managed this task. The company is a developer of drug information databases whose Informed Decisions subsidiary had developed an e-prescribing program for Medicaid in Florida and was working with Mississippi Medicaid on a similar project.

    Kevin Hutchinson, president and chief executive officer at SureScripts, owned by the National Association of Chain Drug Stores and the National Community Pharmacists Association, said the company started work during Labor Day weekend to pull data from pharmacies in the Gulf Coast based on ZIP codes provided by the Federal Emergency Management Agency, covering a 90,000-square-mile swath of Alabama, Louisiana and Mississippi.

    Although complex, this task was simplified by chain pharmacies that store medication information in data centers far from the hurricane-damaged Gulf Coast, Hutchinson said.

    Leavitt on EHR

    On the Thursday after Labor Day, HHS Secretary Mike Leavitt illustrated the importance of obtaining medication information for Gulf Coast evacuees in a speech he gave at the eHealth Initiative conference in Washington, D.C. He told the story of an evacuee who left home with a variety of pills and evacuated to the Superdome. But clinicians could not identify the pills because the extreme heat in the Superdome had fused the drugs together. "If there was ever a case for EHRs, this disaster underscores the need," Leavitt said.

    By the end of Labor Day week, SureScripts had gathered data from five chain pharmacies -- Albertson's, CVS, RiteAid, Walgreens and Walmart -- covering 860,000 Gulf Coast customers and 3.2 million prescriptions. The company was working to obtain similar information from other chains, including Eckerd, Safeway, Target and Winn-Dixie.

    Rochelle Woolley, senior vice president and communications officer at RxHub, said the company used the FEMA-provided ZIP codes to gather medication information, which health care professionals could then correlate with information from SureScripts and Gold Standard.

    The Veterans Health Administration also provided prescription information for the post-Katrina medication portal, Woolley added.

    Grass-roots identification system

    Although Brailer's office is still working to develop standards for a national patient identifier, Woolley said, the grass-roots post- Katrina working group quickly came up with its own patient identifier based on first name, last name, date of birth and gender to identify evacuees in a master index maintained by Gold Standard.

    Leavitt called Gold Standard CEO Russ Thomas for his help shortly before Labor Day weekend, and the company immediately started gathering Medicaid prescription data and developing an interface for the post-Katrina evacuee medication system, said David Medvedeff, president of the company's Informed Decisions division.

    Gold Standard has the largest online medication database in the world, Medvedeff said. Using the post-Katrina medication system, clinicians could tap into the database to search for medications by their identification numbers. The system would return a match and display allergy information. It also searched prescription information from the SureScripts, RxHub and Medicaid databases, Medvedeff said,

    By Sept. 11, shelters in Texas and Louisiana started testing live versions of the medication database, according to Frisse's blog. SureScripts continued to gather data from chain pharmacies, while Gold Standard worked to incorporate data from the Louisiana Medicaid system, which it did not accomplish until Sept. 20.

    Diamond said the working group also needed to focus on legal problems as it developed the portal. HIPAA privacy rules require written agreements between parties for the exchange of medical information. This requirement was waived in favor of verbal privacy agreements until written agreements could be executed and exchanged.

    The working group, which also had to deal with a thicket of state privacy laws, finally decided to delete any information associated with sensitive conditions, such as HIV/AIDS, Diamond said. Privacy laws also covered clinician access to the portal, so the working group enlisted the help of the American Medical Association to handle clinician authorization, Diamond said.

    Katrinahealth.org

    HHS, Markle and its working group partners launched www.katrinahealth.org Sept. 22. The Web site is an entry point into a medication portal covering more than 1 million Katrina evacuees.

    One of the important lessons learned in developing the medication Web portal was "that the problem-solving had little to do with technology," Diamond said. "Legal and policy issues were much more of a challenge for us." Aside from that, working group partners "just rolled up their sleeves, worked nights and weekends, and would not let anything stand in their way," she said.

    Townsend said she considers the effort a triumph of goodwill in response to a crisis.

    Despite the massive effort, by mid- October, the Web site had received fewer than 2,000 inquires from clinicians nationwide. Diamond said Markle planned to increase its outreach to clinicians through the AMA, which should increase use of the system. In the end, the site will serve as a model for how to develop similar systems for disasters in the future, she said.

    New Orleans' elderly Medicaid patients were among those hardest hit by Hurricane Katrina, and few carried their medical records with them when they were forced to abandon their homes. But the fact that the state kept payment records for the program enabled health care officials to piece together at least partial health histories for some evacuees.

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