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‘There is just no transparency’: Pushback grows as state continues to shield info on COVID-19 in long-term care

State Sen. Karin Housley
MinnPost photo by Peter Callaghan
“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.”
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.

Comments (7)

  1. Submitted by Joel Stegner on 06/02/2020 - 11:24 am.

    People can be trusted to interpret complex data correctly? Hardly. Example. Trump claims antifa are behind the arson around the country, not the white supremacists who want to trigger a race war. There is no data to support his claim, or any broad claim about the violence – maybe someday but not now by people with no healthcare background.

    Here is the situation with nursing homes. We do not know how the virus got in, but likely it was before the stay at home orders brought in by family or staff without symptoms or who had symptoms and didn’t stay home. Once in a home, the design and care model spreads it easily.

    All patients are frail, but the higher the age, the likelihood of deaths increase – at age 100, it is over 50% but not everyone, as some over 100 are healthier than those in their 80%. Unless a home has documented problems, the deaths may just be bad luck – or more untested, symptom free staff who are positive.

    And this is a cyclical thing. A home looks good before first exposure, cases rocket up but eventually cases subside. If you are considering a new placement, do you put your parent in a home where it hasn’t hit yet, hoping it does not happen, or after the exposures are on the downward slope? It is placing our bets and hoping for the best. Or do you switch homes, understand that moving seniors has an additional set of risks.

    We have limited capacity of homes. Although profoundly bad ones shoukd close, closing a lot of capacity results in crowding, magnifying the problem of social distancing.

    Then you have people getting discharged from hospitals. What do you do with them. Nursing homes take a risk by accepting them. Perhaps the state should create a level of care like the old TB hospital, but that has its set of complications, including staff recruiting and budgets.

    I could provide this discussion as a retired healthcare market research manager, but I think when it comes to picking a facility, it is about extending life with some quality of life, which is not always possible. People need to think through how they are going to use the data and whether releasing the data has negative effects.

  2. Submitted by Juli Ras on 06/02/2020 - 12:42 pm.

    I was curious to see what other states are doing and to see if the HIPPA constraint is valid. Based on this website, it appears that nine states are reporting at the facility level. After that, it’s all over the board.

  3. Submitted by Mary Jo Schifsky on 06/02/2020 - 01:31 pm.

    As a member of the MN Board on Aging, I recommend accessing the the Office of Ombudsman for Long-Term Care, a program of the Minnesota Board on Aging. Regional ombudsmen and volunteers work to enhance the quality of life and services for people receiving long-term services and supports. They are working closely with family members and facilities to support sharing current knowledge and information.

  4. Submitted by Gregg Larson on 06/02/2020 - 02:26 pm.

    The responses offered by MDH spokesperson Doug Schultz are misleading at best. Let’s take them one at a time, but first consider what information should be supplied.

    MDH should release cumulative data on both infections and deaths at the congregate care facilities that already appear on their website list of facilities that have reported at least one COVID-19 infection. The last time that I counted, there were 240 facilities on the list. As it is, the list is meaningless; once a facility appears on the list, there is no distinction between facilities where disease is rampant or rare.

    So, what are their arguments against doing so? First, the agency’s “legal guidance” indicates that even aggregate data could reveal private health information about individuals. They made this same dubious argument when they resisted listing congregate care facilities in early April. They finally relented, and agreed to list facilities, with more than 10 residents, that reported an infection. But now they’re raising the argument again, this time about facilities already on their list, even though cumulative data is not identifiable data under federal health privacy law. Suggesting that 15 cases in a facility population of 30 would make it easier to identify individuals is ludicrous.

    Their second argument draws a parallel with cases in an apartment complex, which they state they wouldn’t report. The problem with this argument is that the most vulnerable population is in congregate care facilities, not apartment complexes, where 81% of Minnesota deaths have occurred, the highest percentage in the US. The comparison is not only disingenuous, but also begs the question of whether information about a serious outbreak in an apartment complex would also be suppressed by MDH, even though it could pose a significant public health threat.

    The third argument made is that recording cumulative data would be burdensome. However, the facilities already report infection and death data to MDH, and tabulating it by facility would seem to be a very wise use of public health resources given where the pandemic is – in congregate care facilities. We should not have to rely on the newspapers to dig up the news about 47 deaths at one facility, or 44 deaths at another, etc.

    If Mr. Schultz truly believes that “People should assume any facility could have cases,” than the logical follow-up would be “How many infections and deaths have been reported at any facility.” Having the information would reveal which facilities may have undertaken effective infection control measures, and which haven’t; which facilities have agreed to accept COVID-19 transfers; and which facilities may need further remedial action. Most importantly, having this data can inform responsible decisions that Minnesotans want to make about their loved ones.

    Their last argument falls into the category of “we can’t trust the public with the information because they’ll make the wrong decisions.” This is always the refuge of government when it wants to conceal facts that should be public. I guess we’re used to it, but it’s especially troubling when it’s a public health agency that should be an ally, not an obstacle.

  5. Submitted by Bruce Pomerantz on 06/02/2020 - 08:52 pm.

    Compiling the data “would not be a wise use of limited resources.”

    Exactly how may MDH clerical staff have advanced degrees and are involved in COVID-19 research?

    “Contractors and service providers have refused to enter facilities they have assumed are hotspots.”

    So the reasoning is better to have these individuals refuse to enter all nursing homes rather than make judicious decisions, such as taking added precautions or charging extra for the danger they will encounter.

    EXactly how many of these assumed hotspots has Mr. Doug Shultz entered voluntarily?

  6. Submitted by Tom van der Linden on 06/03/2020 - 11:22 am.

    As all reporters (I was one for a long time) know, government agencies never offer up information unless forced to by state law. HIPPA is just the latest excuse.
    That’s why Minnesota journalism has celebrated “Sunshine Day” for a long time. Every year there there are attempts at the Legislature to restrict public access to government records. All citizens, of either party, should support open meetings and open records.

  7. Submitted by Marlys Harris on 06/03/2020 - 12:30 pm.

    Great story!

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