State and federal data on nursing homes is incomplete and misleading

Nursing homes are the most dangerous place to live during the COVID-19 pandemic but data on cases at these facilities is difficult to track. (Photo by Getty Images)

Nursing homes are considered the most dangerous places to live during the COVID-19 pandemic, but state and federal officials are routinely reporting misleading information on infections in those same facilities.

To date, more than 40% of all COVID-19 deaths in America have been linked to nursing homes, but collecting accurate and up-to-date information can be a challenge.

At the state level, the Iowa Department of Public Health’s website for data on COVID-19 in nursing homes identifies only those homes with a current, confirmed outbreak.

No mention is made of the homes that have had some of the biggest outbreaks in the state, such as Heritage Specialty Care in Cedar Rapids, where 113 residents or workers were reported to be infected in May, or the Bishop Drumm Retirement Center in Johnston which has reported 95 infections.

In addition, deaths in Iowa nursing homes are reported by IDPH on a cumulative basis, but for infections, only the number associated with current, active outbreaks is listed. There is no tally of the total number of nursing home infections in Iowa since the beginning of the pandemic.

So, while there have been at least 56 long-term care outbreaks in Iowa, the state’s website reports only 15 nursing homes with outbreaks.

The IDPH site also shows a statewide total of 282 infections in Iowa long-term care facilities, but 392 deaths from COVID-19 — an anomaly that stems from mixing current data with cumulative data.

IDPH spokeswoman Amy McCoy said on July 1 that “the numbers at the webpage right now are related to current outbreaks, but we’re updating the data system to reflect the cumulative total. When a facility is no longer on outbreak status, their facility is taken off the list, but it has pulled out their totals, so it will need to be a system fix.”

As of Friday, the site had yet to be fixed.

At the federal level, the Centers for Medicare and Medicaid Services announced in April that it was requiring all nursing homes to report their COVID-19 cases so the information could be shared with the public on the agency’s website.

The agency said the move was “part of the Trump Administration’s historic transparency efforts to ensure residents, families and the general public have information about COVID-19 in nursing homes.”

But some of the information being reported by CMS website conflicts with that reported by the states. The number of COVID-19 death in Iowa nursing homes, for example, was reported on Friday to be 299 by CMS,  and 392 by IDPH — a difference of 33%.

In addition, thousands of COVID-19 infections are not disclosed on the CMS site. One reason: The agency doesn’t require reporting of COVID-19 cases confirmed during the first eight weeks of the pandemic.

As a result, the nursing home that is considered “ground zero” for care facility outbreaks in America, the Life Care Center of Kirkland, Washington, shows no COVID-19 cases and no deaths, despite having 100 confirmed infections and 34 deaths.

Also, none of the data, including the total number of infections and deaths, has been transferred over to CMS’ own Nursing Home Compare website, which is designed to provide information to the general public in a user-friendly format.

The information on infections can be located through a nationwide map on the CMS site, but not easily.

Nursing homes are displayed on the map in a mosaic of 15,000 dots. To find a specific home, a user can attempt to click on a dot after first zooming in on the city or street where it’s located, but zooming in causes the dots to almost disappear. Zoom out and the dots reappear, but on a largely unmarked map that makes locating any particular facility difficult.

Once a home is located, the data that’s shown can be misleading. As with the Iowa website, CMS reports only the number of current infections in a facility, but the federal agency labels it as “Residents Total Confirmed COVID-19.”

As a result, CMS reports only two COVID-19 infections at Bishop Drumm in Johnston, but 11 deaths.

At a June 25 congressional hearing, U.S. Rep. Lloyd Doggett, a Democrat from Austin, Texas, criticized CMS for waiting too long to begin reporting infections in nursing homes.

“When they did publish, it was incomplete and riddled with errors,” Doggett said. “To date, over 800 facilities still haven’t even reported data.”

CMS Administrator Seema Verma was invited to testify at the hearing, but did not, prompting Doggett to say the agency was “more terrified of transparency and accountability than of coronavirus.” CMS officials did not respond Friday to an inquiry from the Iowa Capital Dispatch.

U.S. Sen. Chuck Grassley of Iowa recently introduced legislation that would provide nursing homes with additional funding related to the pandemic but also require them to report all COVID-19 cases and deaths going back to Jan. 1. The bill appears to have bipartisan support in the Senate.