By Jonathan Krim
Washington Post Staff Writer
Wednesday, September 14, 2005
The federal government is making medical information on Hurricane Katrina evacuees available online to doctors, the first time private records from various pharmacies and other health care providers have been compiled into centralized databases.
The data contain records from 150 Zip codes in areas hit by Katrina. Starting yesterday, doctors in eight shelters for evacuees could go to the Internet to search prescription drug records on more than 800,000 people from the storm-racked region.
Officials hope to soon add computerized records from Medicaid in Mississippi and Louisiana, Department of Veterans Affairs health facilities, laboratories and benefits managers.
The records are one step in reconstructing medical files on more than 1 million people disconnected from their regular doctors and drug stores. Officials fear that many medical records in the region, especially those that were not computerized, were lost to the storm and its aftermath.
Although the immediate focus is on urgent care for hurricane victims, participants in the effort say the disaster demonstrates a broader need to computerize individual health records nationwide and make them available throughout the medical system. Such a step could, for example, give emergency room doctors a way to quickly view medical histories for late-night accident victims.
Electronic health records are controversial among many privacy advocates, who fear the data could be exploited by hackers, companies or the government.
Ray Fowler, head of medical relief operations in Dallas, said "it was extremely scary" for doctors to have no records to rely on as thousands of evacuees poured off buses with serious injuries or infections.
Some patients had been on various medications before the hurricane, for conditions such as high blood pressure, but did not know what prescriptions they took, Fowler said.
Currently, roughly 8,000 people are in critical care shelters, while other seriously ill patients are being treated in hospitals outside the Gulf Coast region. But many of the 250,000 evacuees in various shelters also need medical attention.
"We think this could help save some lives," said Dr. David J. Brailer, coordinator of health information technology for the Department of Health and Human Services, who is spearheading the effort.
The system took about 10 days to organize, with daily conference calls involving as many as 60 state and federal officials; emergency medical providers; insurance, pharmacy and medical-software company representatives; and government lawyers.
Participating pharmacies so far include CVS, Rite Aid, Albertsons, Walgreens and Wal-Mart. Expected to be added soon are Winn-Dixie, Kmart and Target.
Brailer said he was concerned throughout the process with privacy issues. Only medical personnel at the various shelters and hospitals treating evacuees will have access to the information.
Federal regulations do not require patient consent for their records to be shared for medical purposes. Companies or organizations that have such data must have formal agreements with each other before data can be exchanged, but the government said it would not enforce those rules while Katrina victims were in need, as long at the entities had verbal agreements to use the data for the relief effort.
States with more stringent regulations suspended their rules as well.
"We've been extremely cautious," Brailer said. "There were a lot of things we could have done that we didn't do."
Brailer said in his original vision, the database program would end once evacuees are permanently resettled, either back in their home communities or elsewhere.
Others involved in the effort, however, already are discussing ways to enhance the system and create personal health records for those who might need to move frequently over the next several months. As constructed, the databases do not allow doctors to update the records with information on treatment provided in the shelters.
"We're already preparing for a second wave of victims who have been in hotels but the money is running out," Fowler said.
The Bush administration and the pharmaceutical and technology industries have long argued that standardized, individual electronic health records that can be shared and quickly viewed would improve care and cut costs.
Electronic records also would speed the way for patients seeing different specialists, switching doctors or moving frequently in an increasingly mobile society. And they could be used to identify medical inefficiencies in the public-health system, proponents argue.
Even before the hurricane hit, Brailer's office was preparing to award contracts to create a "national architecture" for electronic records that every player in the medical system could use. The government is not mandating such a system nor will it operate it, Brailer said, but it wants to enable the private sector to do so.
On Monday, Health and Human Services Secretary Michael Leavitt named 16 people to a task force to advance the administration's goal of bringing electronic health records to most Americans within 10 years.
None is from a recognized privacy organization, and privacy advocates worry that even beneficial efforts during an emergency can expand beyond the scope of the original crisis.
Sue A. Blevins, founder of the Institute for Health Freedom, a medical-policy think tank, said she supports emergency programs such as the Katrina databases. But she said that "many things are done during a crisis that society normally would not accept."
Blevins opposes national electronic health records for individuals because the Bush Administration eliminated the right of patients to give consent before their health information could be shared under many circumstances.
"When you don't give people the freedom to decide how much information they want to share . . . the only choice they have is to either lie or withhold the information when they want their privacy," she said.