When the administrator of the Saugus Rehab and Nursing Center in Saugus, Massachusetts, heard that a new Medicare website reported her facility had 794 confirmed cases of COVID-19 -- the second highest in the country -- and 281 cases among staff, she gasped.
"Oh my God. Where are they getting those numbers from?" said Josephine Ajayi. "That doesn't make any sense."
Those weren't the numbers that her facility reported to the CDC's National Healthcare Safety Network, under new rules from the Centers for Medicare & Medicaid Services (CMS), she said.
Ajayi said her 80-bed facility actually reported 45 residents have tested positive and five residents died, although the CMS website showed no Saugus deaths. About 19 staff members tested positive for the virus, and most have returned to work, she said.
Officials at skilled nursing facilities around the country said Monday they were shocked to see their data reported inaccurately -- wildly so in some cases, as at the Saugus home -- on the new CMS public website launched Thursday. The numbers are scaring families, harming their reputations, and in some cases are physically impossible, given the number of beds or staff in their facilities, they said.
CMS approved an interim final rule May 1 requiring more than 15,000 nursing homes receiving Medicare or Medicaid reimbursement to report COVID data by May 31, and weekly going forward.
The data fill 56 columns detailing COVID-19 infected residents, staff, testing, and equipment, going back to at least May 1. As of Thursday, CMS said 88% of the nursing homes in the country had reported. Going forward after a grace period ended June 7, they risk fines of $1,000 and up for every week they fail to update their data.
But in many cases, nursing home officials said their data were somehow scrambled, either because nursing home personnel reported in the wrong columns, or the numbers were loaded incorrectly somewhere between the CDC and CMS.
For example, Southern Pointe Living Center in Colbert, Oklahoma, with 95 beds, was reported to have had 339 residents die of COVID-19, yet no confirmed or suspected cases.
"We have not lost anyone nor have we had a [COVID-19] case in the building," said a woman identifying herself as an assistant at Southern Pointe but who declined to give her full name. The day after CMS released the data, on Friday, she said someone from the CDC called the facility to ask if their numbers were correct as reported, "and we told them no."
She added, "I don't know how that happened but that is an error on their end." As of Tuesday morning, the posted data had not been corrected.
"Insanely wrong"
MedPage Today first learned of the inaccuracies shortly after publishing an article Friday on the new public database. In that article was a list (since removed) of "outliers" -- those with the highest numbers of cases and deaths among residents and staff -- that included Dellridge Health and Rehabilitation Center in Paramus, New Jersey. The CMS data indicated it had the most COVID-19 deaths of any nursing home in the country at 753.
That number is "insanely wrong," Jonathan Mechaly, Dellridge's marketing director, wrote in a frantic email. "We are a 90-bed center and have had less than 20 deaths!! How do you report such inaccurate numbers?"
After a download of the data, a quick sort of the columns easily reveals extreme totals in various categories. But no one called those nursing homes before the data were released to doublecheck, for example, when 100-bed Smith Village in Chicago was shown to have 1,105 confirmed COVID-19 cases among residents and 955 confirmed COVID-19 cases among staff, the most in the country.
"We apparently misread the instructions, which were not very clear," Yahaira Ramirez, Smith Village's director of clinical operations told MedPage Today. The facility has had only 38 positive cases among residents and 14 deaths, and among staff, 37 positive or suspected cases but no deaths, she said. But instead of showing up as a total, those numbers somehow appeared as if there were additional cases every day in May. No one caught the error.
It would have been helpful if someone from either agency had at least checked on the highest outliers before publishing, Ramirez said. "We've been trying to abide by a lot of the guidelines (from) CMS and CDC, but it's been challenging. You talk to different people and you get a different answer. Unfortunately, I'm not surprised that they haven't reached out."
Asked why there appeared to be so many errors in the data, a CMS spokesman emailed this response:
"As with any new reporting program, there can be data submission errors in the beginning. In an effort to be transparent, CMS made the data collected by the CDC public as quickly as possible balancing transparency and speed against the potential of initial data errors."
"CMS is advising nursing homes when their submitted data has not passed certain quality checks so they can review the CDC submission instructions and their data submission for accuracy. As CMS continues to analyze the data going forward we expect fewer errors as nursing home staff get used to these requirements and CMS has more time to quality check the data."
Asked why CMS, at the very least, did not contact the highest outliers, for whom such large numbers of COVID-19 cases or deaths were highly unlikely because of their size, the spokesman did not respond.
It's also true that CMS Administrator Seema Verma, in announcing the database's launch, told reporters on a phone call that it would probably include inaccurate data.
Destroying family trust
Paula Sanders, an attorney in Harrisburg, Pennsylvania, who represents some 200 skilled nursing facilities, said many of her clients "can't figure out where these numbers are coming from" and have been "frustrated" in trying to get them corrected since Thursday.
"This has destroyed the trust between the facilities and the families, because they've been reporting and telling the families, these are our numbers," Sanders said. "Then these numbers come out and don't make any sense at all. Unfortunately, some families are going to believe the government over the facilities."
Sanders, who is on the legal committees of two nursing home advocacy groups, the American Health Care Association and LeadingAge, said within the two federal agencies, "there was such a rush to get these numbers out that there was no quality control. You'd think the government would say, 'yes, we want to absolutely make sure the data we're providing is correct, because the reputation [is in jeopardy] for the facilities if we're wrong.'"
"But they weren't doing that. The amount of time these facilities have spent away from patient care trying to respond to questions from reporters or family over meaningless numbers...it's a shame. It's just a shame."
Adding to the confusion, Sanders said, was the CMS rulemaking process regarding reporting requirements and directions, which seemed to change even after facilities started submitting.
Sometimes the fault was admittedly that of the facilities. The CMS website showed that 92-bed Robison Jewish Health Center in Portland, Oregon, had eight staff members die of COVID-19. In fact, they had no deaths. Administrator Krista Mattox said the problem was their own data entry error, "but it caused ripples through our Oregon state licensing office."
It would have been nice if either agency had sent an email notification showing how their data would show up, but that didn't happen.
Karl Steinberg, MD, president-elect for the Society for Post-Acute and Long-Term Care Medicine, said it's "highly improbable that nursing homes would make such mistakes in their data, for example, making the numbers of deaths higher than they actually were."
He added that the whole effort to publicize COVID-19 cases in nursing homes is wrong-headed and counterproductive. "Seema Verma has pretty much said we're going to slam these facilities, bring the hammer down hard. But to conflate quality of care in a facility with the number of cases is horrific" especially since in some parts of the country, nursing homes were required by their state governments to accept COVID-19 patients.
"I think they're just trying to scapegoat and lay blame on the facilities," said Steinberg, medical director of a San Diego area hospice. "Certainly some could have done better, but in a lot of cases they were like sitting ducks."