It is a disastrous outcome. Residents in nursing homes and assisted living facilities represent 5 percent of total Massachusetts COVID-19 cases, but account for 30 percent of deaths. Or is it 50 percent?

That depends on the definition of death from COVID-19. Did 6,200 or 9,000 Massachusetts elder care residents die of COVID-19? And which facilities were the deadliest? These questions are not academic. We must know the answers if we are to prevent this tragedy from happening again. But shockingly, we don’t have accurate numbers.

The Massachusetts Department of Health is charged with reporting deaths to the public. But the department’s reporting has been flawed — with changing definitions, inconsistencies for different types of elder care facilities and the use of ranges rather than specific numbers.

As late as this past spring, the agency was reporting more than 9,000 long-term care deaths. Then it entirely replaced that figure with a total that was thousands of deaths lower. This wide gap, attributed to a change in definition of a COVID-19 death, has not been clearly explained.

The fact is, we should know exactly how many elder care deaths occurred.

The state’s degree of reporting has changed frequently throughout the pandemic. Early on, the commonwealth only provided county-wide reporting of cases and deaths. After pressure from patient advocates and Pioneer Institute, the state began reporting by municipality.

We further called on the state to provide site-level data, so families could make informed decisions about placing loved ones.

When the state began to report at the site level, it chose to report cases in specific nursing homes and assisted living facilities only in ranges. Actual numbers of deaths were published for nursing homes, but not assisted living facilities, unless a consumer with commanding detective skills could locate the “Aggregative Report” buried in a plethora of other state data.

Eventually, in April 2021, the state began to conspicuously publish total COVID-19 case and death numbers for each nursing home, as well as how many occurred during the previous 14 days. But there was no improved transparency for assisted living facilities. The nursing home statistics proved crucial to informed decision making during the worst days of the pandemic and during the first phases of vaccine distribution.

Yet in July 2021, the state abruptly stopped publishing data on elder care facilities anywhere except in the Aggregative Report.

We fully understand that state agencies were scrambling to get control of the pandemic early on and effective solutions require good data. It is not surprising that state agencies also fumbled when it came to mobilizing and delivering test kits and medical equipment, establishing infection control protocols and financing mechanisms as well as other health and safety processes for these facilities.

It’s been a mess. And the messiness reduces our ability to draw lessons and prepare for the future — especially when it comes to protecting such a vulnerable population. As a result, we believe the state should convene a special, independent state commission to:

  • Examine institutional and external variables that allowed the large number of cases and deaths in elder care facilities;
  • Establish protocols to track deaths and other metrics; and
  • Make recommendations regarding infection control and prevention procedures to ready the state for future pandemics.

As part of this work, the commission must provide an understandable explanation of the change in COVID-19 death criteria that resulted in the number decreasing from 9,000 to about 6,200 deaths of nursing home and assisted living residents. The public deserves to know how many elder care facility residents died during the pandemic. Finally, it must resume regular, accessible and transparent reporting of COVID-19 cases, deaths and vaccination rates in every elder care facility.

The pandemic delivered a grim reminder of chronic, ongoing issues in nursing homes and other elder care facilities. Clear and transparent data on COVID-19 deaths and cases — both generally and in nursing homes and assisted living facilities — is critical for families deciding where to place loved ones and for hospital discharge planners making decisions on patient placements.

Massachusetts seniors and their families deserve better.

Barbara Anthony is a senior healthcare fellow and Mary Z. Connaughton is the director of government transparency at the Pioneer Institute, a Boston-based think tank.