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Gov. John Bel Edwards, right, and Dr. Jimmy Guidry, state health officer, left, watch as Dr. G. E. Ghali, chancellor of the LSU Health Sciences Center-Shreveport, talks about the status of the state in regard to COVID-19 Thursday July 30, 2020, in Baton Rouge, La. The state will remain in Phase 2 for at least another week. (Photo by Bill Feig, The Advocate)

Early in the pandemic, the Louisiana Department of Health started sending out lists of patients who tested positive for the coronavirus to local emergency officials, in an effort to help first responders know when to prepare for interacting with someone with the virus.

But in some rural parishes, those emergency officials combed through the names, noticed duplicates on the lists, and shared the lists with other elected officials. Several claimed it was evidence the state is inflating the number of cases in their region because their list didn’t match up with the Health Department’s official tally of cases.

Now the Health Department says locals are misusing the lists, violating patient privacy laws and misinterpreting the data to reach erroneous conclusions. This week, the Health Department sent out a data sharing agreement that officials must sign in order continue receiving the data. 

The saga reveals a wide gulf in trust between some of the state’s more rural parishes and the state Health Department, as well as the difficulty the state has experienced communicating complex sources of coronavirus data. 

“The problem we had is when we did share it, we told them this is HIPAA (protected) information, you’re not to share it with everyone, they have not always followed our guidance,” Dr. Jimmy Guidry, Louisiana’s state health officer, said Thursday, referring to the Health Insurance Portability and Accountability Act. “They have shared and put information out and put names out and that changes the way people react to you, at your home, in your community.”

The Health Department has spent weeks rebuffing claims from local officials – particularly from the small, rural Red River Parish – that the lists prove the state is inflating its numbers. The state scrubs the data regularly to remove duplicate names to make sure people who are tested multiple times don’t inadvertently inflate the number of cases. While duplicates do occasionally make it into the day’s totals, the Health Department regularly removes them.

Guidry said local officials are misinterpreting the lists of names, and may actually be violating patient privacy laws by sharing them for reasons other than the intended use: To help first responders prepare when visiting someone with the virus, something that was a dicier prospect earlier in the pandemic when the state was short on personal protective equipment.

Shawn Beard, the Red River Parish police jury president, said he’s seen the list of names, and he doesn’t believe the Health Department’s explanation. Later Friday, Beard clarified that he had not personally seen the list of names.

“It’s funny to me that if they’re not misrepresenting then why did they all of the sudden quit sending out these reports?” Beard said in an interview.

“They want to shut us up,” he added.

To Beard, it’s “simple mathematics” that explains his position. He said the lists include multiple instances of the same person, therefore the number of cases must be an overcount.

To the Health Department, some of these parishes simply don’t understand the information they are receiving, and sharing the list of names with other elected officials for reasons other than helping first responders is improper. Beard disputed that his obtaining secondhand information from the list is a violation of patient privacy laws because the Police Jury oversees the Office of Homeland Security and Emergency Preparedness, which gets the list of names from the Health Department.

According to guidance from the U.S. Department of Health and Human Services, sharing such data with local first responders does not violate medical privacy laws. However, the data should only be shared to the "minimum necessary" extent to accomplish the purpose, which is to protect first responders. 

Beard, who stressed he was speaking on behalf of himself, not the entire police jury, also said he disagrees with the governor’s mask mandate because masks “don’t work,” adding “we do live in a free country.” The U.S. Centers for Disease Control and the White House Coronavirus Task Force have recommended people wear masks to prevent the spread of droplets from the wearer to others. 

He also expressed skepticism of hospitals being overrun, pointing to a widely-shared video of a Houston doctor falsely claiming hydroxychloroquine is a cure for the virus, which has since been removed by social media platforms for spreading misinformation.

The Health Department earlier this month released data showing total cases and total positive tests, which shows there are far more positive tests than cases. 

The latest figures on testing, which go through July 22, show the state had received 151,740 total positive tests that resulted in only 107,394 cases, meaning it removed more than 44,000 duplicates.

Beard is not the only local official to use the lists to try to undermine the Health Department’s data. LaSalle Parish Sheriff Scott Franklin, speaking on the conservative Moon Griffon's radio show this week, said “it burns me up” when he sees media outlets reporting new cases, because he believes that the case data includes duplicates. He also said he won't sign the new data sharing agreement, which he dubbed a "gag order," and insisted he did not violate HIPAA.  

Health officials have repeatedly stressed that these local officials are mistaken, and the Health Department has even pored over the list of cases, which is different from the lists being shared with local officials, and verified the veracity of the real numbers. The case numbers are reported on the state’s dashboard each day.

After initially sharing a rolling list of infected individuals, the state Health Department this month began only sharing lists of new names, because so many of the people who have been infected no longer have the virus. On Thursday, the agency sent an email to all parish emergency response leaders telling them if they want to keep receiving data reports, they must sign a new data sharing agreement.

That agreement establishes that the information can only be used to protect first responders or medical technicians, and that the officials can’t give the data to anyone “outside the organizations structure” of the parish’s office of homeland security and emergency preparedness. They also must destroy earlier records and have policies in place to protect the privacy of the people listed.

As of May, Louisiana was one of 10 states that shared lists of names of infected people with local officials, according to the Associated Press. Another 25 states share lists of addresses of those who tested positive, all for the purpose of aiding first responders. Multiple states, including Tennessee and Wisconsin, later stopped sharing the information.

Some community activists at the time said they were concerned the sharing of the information could lead to the profiling of people in minority communities that already have a fraught relationship with law enforcement. 

Louisiana is not the only state to discover misuse of the data, according to the AP. New Hampshire found first responders were informing local leaders of positive cases, but quickly put an end to that practice.

“Normally we don’t share any information with local governments when it comes to health care information,” said Guidry, of the Louisiana Department of Health. “We shared some so they knew in their community there are people with COVID and if their first responders responded they might be exposed.”

Staff writer Jeff Adelson contributed to this story. 

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