County privacy policies on COVID-19 cases creating tensions over transparency

Hoosiers looking for localized information about the spread of the novel coronavirus are hitting roadblocks put up by epidemiologists, county and state officials and federal regulations.

For example, the Hamilton County’s Health Department, like most health departments across the state, cites individual patient privacy as the primary reason why some pandemic data—such as the number of positive cases per city—isn’t publicly disclosed.

“The people that need to know this information are getting it through dispatch. Beyond that, it doesn’t affect the vector of transmission for coronavirus,” said Charles Harris, Hamilton County’s health officer.

The Health Insurance Portability and Accountability Act, better known as HIPAA, covers the allowable uses and disclosures of protected health information handled by health care providers, health insurance plans and health care clearinghouses that transmit health data electronically in connection with medical transactions.

According to the U.S. Department of Health and Human Services, those same privacy rules apply to county health departments that perform those functions. If counties release information that allows the public to associate individuals with details about their medical diagnosis, they could face hefty fines.

Jim Sparks, director of geoinformatics for The Polis Center at IUPUI, said he understands why many residents want to know how many people infected with the virus are in their city or neighborhood.

“We want to understand as individuals what our risk level is. The more granular that information is, the more comfortable we are in assessing our risk level as we move about our everyday lives,” Sparks said.

The Polis Center works to measure and improve community health, well-being and resilience by using geographic data to discern larger patterns. Despite that mission, Sparks said it’s probably best for now to assume the virus is everywhere.

Not everyone agrees it’s in the public’s interest to keep that information private, however.

Al Tompkins, a senior faculty member at The Poynter Institute, a not-for-profit journalism school and research organization in St. Petersburg, Florida, said getting as detailed information as possible is critical for determining which populations are at the highest risk of exposure.

“It’s not just morbid curiosity; it’s absolutely critical to understanding how exposed I am to the threat,” Tompkins said. “That kind of data would be important for us to understand if our health care system is adequately supplied or whether we’re an intensive hot spot that should go into more intensive situation.”

Tompkins said government recommendations and orders for social distancing only will go so far in altering behavior. He said members of the public are most swayed by data that makes it real.

“The localism is what will increase the urgency. The closer to you it is, the more real it becomes,” he said.

Harris said the location of a particular outbreak should not affect whether residents adhere to the statewide stay-at-home order, how they wash their hands or any of the other measures designed to prevent the spread of the virus.

“People should be doing that no matter where they are,” Harris said. “The mitigation and the things to do to stop transmission don’t change whether you’re in a high-density infection area or more of a rural section.”

Shandy Dearth, a lecturer and faculty member of the epidemiology department at IUPUI’s Fairbanks School of Health, said health care experts work with local governments on a case-by-case basis to determine how much information is too much to disclose for a given population.

Marion County has the highest number of confirmed castes in the state (2,290), and Hamilton County has the third-highest (392). The rankings are largely in step with their populations. Marion is the most-populous of Indiana’s 92 counties, and Hamilton is fourth.

Esri, a California-based spatial data analytics company, found Marion was most vulnerable and Hamilton was the second-must-vulnerable to COVID-19 cases because of their high number of frequent travelers and high number of older residents living in areas with a high daytime density.

Hamilton County has published COVID-19 totals, but it has not provided a breakout of how many of those cases were in Carmel, Fishers, Noblesville, Westfield or elsewhere in the county, which covers 402 square miles.

Some counties have been more forthcoming about certain aspects of confirmed cases. For example, while the Scott County Health Department is not identifying patients’ cities of resident, its official statements on each confirmed case list where the infected person went on what day.

“Our first priority is protecting their identity, but we also want to make the public aware of places where the exposure was high,” said Michelle Mattern, the Scott County Health Department’s administrator. “We only have one Walmart in our whole county, so when we say Walmart, people know where that is at.”

The health department warns businesses before listing them, Mattern said. She said business owners tend to understand that the information is helpful to community members trying to stay safe.

Numerous employers around the state have disclosed or confirmed cases among their employees, from Eli Lilly and Co. in Indianapolis to the cities of Bloomington and South Bend.

Mattern said providing factual information helps squelch rumors that might otherwise circulate. She said rumors that Scott County’s first case worked in a large manufacturing facility began circulating in late March, even though the patient wasn’t actually working.

Ultimately, that manufacturing company had to issue its own release to quell the rumor.

“I think a lot of businesses in small communities are transparent because they want to be the one to spread the right information,” Mattern said.

Tompkins said rumors and conspiracies thrive during pandemics, and the free flow of information is the best antidote. He said that approach can be achieved without endangering individual privacy.

“The more I know, the more I trust. What I don’t know, I have to start filling in the narrative myself,” Tompkins said.

Harris said the Hamilton County’s Health Department is contemplating increasing the level of detail it provides. He said its board of directors is evaluating whether to divide the county into quadrants, with COVID-19 cases provided for each.

He said it’s possible the board would go even further and decide to release to the public the heat map used by first responders.

Zachary Baiel, president of the Indiana Coalition for Open Government, said he understands why counties like Hamilton County want to exercise caution, but believes there might be room for compromise.

“Maybe the larger cities could release that information, then those smaller towns could be an aggregate number,” he said.

Steve Key, executive director of the Hoosier State Press Association, said county’s decisions to release information have been across the board.

He said he doubts those that tilt toward transparency are at genuine risk of facing fines for HIPAA noncompliance.

“I would be shocked if the federal government were to go after any health department or hospital that gives generic directory information out about patients with the idea that it can help people understand how serious an issue we’re talking about,” Key said.