(Update: CMS released an updated dataset on June 18 that included most of the missing data. You can access the updated information here.)
When the federal government said it would release data on COVID-19 in nursing homes last month, it promised to offer some of the transparency the state had fought to prevent.
However, data from over a third of the 146 Arizona facilities included in the new dataset is missing from the first weekly update, and it appears the feds may be to blame.
The data is being collected by the Centers for Disease Control and Prevention and released by the Centers for Medicare & Medicaid Services (CMS), which is responsible for standards in nursing homes.
Only data from 14 nursing homes was missing from the initial period of January 1 through May 24, but that number jumped to 55 for data from the week of May 31.
Arizona Health Care Association Executive Director David Voepel attributed the missing data to confusion about timing.
“Many of those facilities did report on 5/31 but it must’ve been after CMS pulled the data for the report,” he said in an email.
He said facilities are changing their reporting timeframe to make sure they are included in the next report, which the centers said would be released tomorrow, June 18.
Three facilities reached by Phoenix New Times said they had submitted the data as required.
“Your question doesn’t even make sense,” said the indignant marketing director at Phoenix senior living facility The Palazzo, who didn't seem to understand why the data they had submitted wasn't publicly available.
Administrators at Beatitudes Campus, a non-profit Phoenix senior living facility, said their health care administrator had been submitting data on time since they were first required to by CMS, and was working to find out why it was missing.
Cheryl Knuup, the facility's senior vice president of health services, said that they report data to the state and county as well as the CDC each week, but it’s a time-consuming process because each system is different. While they’ve received calls in the past about data CMS has shared, they’re not worried about this lapse, she said.
“But again, we can show that we’ve uploaded the numbers,” Knuup said. Beatitudes later provided screenshots showing their data was up to date in the reporting system.
Nursing homes across the country have reported glaring inaccuracies with the data CMS released. In Oklahoma, MedPage Today reported that one facility with only 95 beds was listed as having 339 residents die from COVID-19.
In response to a New Times inquiry, a spokesperson for CMS provided a statement saying the centers expected the accuracy of data would need to be refined over time, and that CMS was weighing the need for transparency and speed against potential issues with completeness.
“The data make clear that nursing homes in the U.S. were significantly affected by the COVID-19 pandemic,” the statement reads in part. “The data also reveal that most facilities were able to use existing resources and guidelines to keep residents safe while some, unfortunately, experienced devastating impacts of COVID-19.”
In response to repeated voicemails seeking specifics on the data collection, the spokesperson said CMS had no comment. He asserted the statement and his no-comment were both on background.
Brian Lee, the executive director of Families For Better Care, an advocacy group for improving nursing home conditions, said families need the information so they can make informed decisions about where their relatives will receive the best care.
“I think people have been clamoring for this data for some time,” he said.
He said families have a short timeframe to choose a nursing home when their relatives are going to be discharged from a hospital after a medical emergency and need the data to make the best choice.
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While Governor Doug Ducey has ordered nursing homes to release COVID-19 data to prospective residents’ families, the Arizona Republic found this is not always the case.
The data released by CMS includes numbers of COVID-19 cases and deaths, as well as information about the availability of protective equipment, and is meant to be updated weekly after an initial grace period.
As well as releasing the raw data, CMS offers a map to look up individual nursing home’s COVID-19 numbers.
The data only includes nursing homes — facilities that offer enhanced levels of care — and not assisted living facilities which also comprise a large portion of group settings that would be vulnerable to COVID-19.