Early in the COVID-19 pandemic, Rob Carlson considered moving his 92-year-old mother from an apartment at a senior living facility in St. Paul. The building had “locked down” to combat an outbreak of the disease at the facility, and Carlson wanted to track how bad it was.
But when he couldn’t get consistent information from management, Carlson and his partner, Gregg Larson, turned to state health officials for help. They came up empty once again.
Carlson said he understands moving his mother carries its own risks, but knowing little about her current home has hurt his ability to judge the situation. “I have no idea how many cases there may be out there,” Carlson said. “There just is not transparency.”
In fact, even as the disease continues to ravage those living in close quarters in places like nursing homes — 855 of the 1,050 COVID-19 deaths in Minnesota were among people living in long-term care — the Minnesota Department of Health has continued to refuse to reveal the number of COVID-19 cases and deaths at each long-term care facility in the state, saying it could violate privacy laws or mislead the public.
Carlson is hardly the only one frustrated with the situation. An influential state lawmaker, public records activists and others are calling for MDH to change course, saying the agency would make the public safer, or at least better informed, by divulging deaths and cases at each facility.
“The more knowledge we can have, the more comfortable we are,” said state Sen. Karin Housley, R-St. Mary’s Point. “Even if it’s unpleasant, we need to know.”
MDH says info could mislead public, break privacy rules
COVID-19 is more dangerous for the elderly and people with underlying health conditions and can spread easily among people living in close quarters. Despite some efforts to control infections, the disease has sprung up at long-term care facilities like nursing homes and assisted living centers across Minnesota. More than 850 long-term care facilities have or have had at least one confirmed COVID-19 case among staff, contractors or residents, according to the state.
The Health Department has given little public information about these outbreaks, however. In March, the state refused to name any of the facilities with known cases, citing privacy laws aimed at keeping personal health information from the public eye. Under pressure from media and lawmakers, the department eventually backtracked, and it now posts that data to a public website, though facilities with fewer than 10 residents are not listed.
MDH has occasionally released other aggregated information, such as the number of long-term care facilities with two or more cases, or large outbreaks. But the agency hasn’t reported spread at individual facilities. Individual long-term care facilities have sometimes told the public about their outbreaks, including St. Therese of New Hope, where more than 50 have died.
MDH spokesman Doug Schultz said the agency’s “legal guidance” is that identifying the number of cases and deaths at each long-term care facility, even in aggregate or summary form, could reveal private health information about individual people. For instance, if a building had 15 cases but fewer than 30 residents, Schultz said it could be easier to identify who might have COVID-19.
He also said MDH would not publish the number of cases by residence for the general public, say, at an apartment complex, so it wouldn’t do so for a long-term care facility either.
Beyond the privacy concerns, Schultz said it would take MDH time to routinely update a list of case and death information at each long-term care facility, which he said would “not be a wise use of limited public health resources.”
Schultz also cautioned that listing facilities and their known cases “wrongly encourages people to look for hotspots and make assumptions, often incorrect, about the risks in those facilities.” Contractors or service providers have refused to enter places they assumed were hotspots, “putting residents at greater risk by not performing critical or needed services,” he said.
“People should assume any facility could have cases,” Schultz said. “A better gauge of the safety of a facility is to understand their infection prevention policies and protocols and resident and worker safety measures in place.”
So far, the Health Department has encouraged people with loved ones in long-term care facilities to ask building management about the facility’s outbreak.
A call for more transparency
MDH’s explanation hasn’t persuaded Mary Streitz, a Minneapolis resident and attorney at Dorsey & Whitney. Streitz said her family is looking for a long-term care facility where her father can move because his health is declining. She wants to find a safe place, and feels she could make an informed decision better with case and death data.
The state should be the most reliable source of this information, Streitz said. Instead, she’s relying on scattered press reports and the voluntary transparency of a prospective long-term care facility. Under the current situation, management at long-term care facilities could have incentives to publicly downplay an outbreak, Streitz said.
In a state that often describes itself as a paragon of “good government,” Streitz said, she would hope the data on COVID-19 cases “would be available to members of the public.”
As for the idea that the public would not be able to properly analyze case and death data, Stretiz said she believes people can be trusted not to jump to wrong conclusions. In her case, she would expect to use the state’s data and other information she is gathering “to determine on the basis of all the facts and circumstances what is the appropriate decision for our family.”
Larson, Rob’s partner, also dismissed the argument that the public isn’t capable of properly analyzing the data: “There’s nothing more onerous than government agencies that decide not to give out information because we might react the wrong way to it.”
Housley, the GOP senator who chairs the Senate’s Family Care and Aging Committee, has also objected to the Health Department on the issue. Housley said she has been asking for data on COVID-19 cases and deaths in each long-term care facility and plans to demand the information at a hearing Tuesday afternoon.
Housley said the government has to “trust the public” and said residents, family members and staff “deserve to know what’s going on where they’re at, or where they’re going to put a family member.”
Housley has frequently criticized MDH during the COVID-19 pandemic for what she says is a lack of transparency on how the agency is handling outbreaks at long-term care facilities. She has pushed for more information lately about the practice of discharging patients infected with COVID-19 to nursing homes and the strategy and results behind more widespread testing of staff and residents at long-term care facilities.
Not all believe the Health Department is legally restricted from disclosing COVID-19 case and death counts at long-term care facilities. Matt Ehling, founder and executive director of Public Records Media, a nonprofit that advocates for government transparency and better access to public records, said that while releasing the names of individuals sick with COVID-19 would be prohibited, it’s not “legally defensible” to suggest that releasing the number of cases at each facility would identify specific people.
Ehling noted the state has released the size of outbreaks at specific meatpacking plants, and said the data on long-term care facilities could help the public judge the state’s actions and policies to address COVID-19.
“I think our whole democratic process is based on the belief that the public can make intelligent assumptions and draw intelligent conclusions” about information the state provides, Ehling said. Withholding it “calls into question their commitment to democracy.”
Rob Carlson did not pull his mother out of her home in St. Paul. He said her building’s management has been more transparent lately, but has “yet to acknowledge really or publish how many cases they’ve had.”
While he said he assumes every facility has cases, and the number changes frequently, he still said the Health Department should provide data on each home. “It’s just a matter of trying to assess the risk of the individual location you’re looking at,” he said.