AUSTIN (KXAN) — More than 4,000 people have died from the coronavirus in Texas nursing homes and assisted living facilities, but a data error by the state has raised new concerns that perhaps more deaths haven’t been counted.

In July, the Texas Health and Human Services Commission began releasing daily public reports about which homes had cases and deaths. As of Monday, state data showed 4,465 residents had died of COVID-19 since the pandemic began.

“Lives literally hinge on this data.”

Brian Lee, Executive Director of Families for Better Care

A family reached out to KXAN Investigators after their mother contracted COVID-19 in an Austin assisted living home and died over the summer. Yet, they noticed the state still listed zero cases or deaths at the facility she lived in.

“That wasn’t possible because my mother died,” one family member said. “It was shocking that they weren’t showing any. So, my first thought is, ‘One of two things is going on here: there’s either deception from the facility where they don’t want anyone to know, or there’s deception from a government agency.”

They’ve asked to keep their mother’s identity and personal details anonymous, but did provide their mother’s death certificate — which lists COVID-19 as one of several causes of death.

“It’s not like we are looking for making my mother’s death famous — we are certainly not trying to. But I certainly don’t want her death to be in vain,” the family member said.

KXAN investigators reached out to the director of the facility in question about the discrepancy, who declined an interview, but claimed she had reported all of the required information to HHSC and followed all state and federal guidelines.

According to HHSC policy, a nursing home must submit notification of any resident death at the facility within 10 working days of the final day of the month of the death. This policy also applies to residents who died within 24 hours after being transported to a hospital. The nursing facilities report any deaths themselves through an electronic system called the Texas Unified Licensure Information Portal, or TULIP.

KXAN requested all nursing home deaths reported to HHSC through the TULIP system, broken down by month, from December 2018 through the beginning of September 2020. The graph below shows those results, including incomplete reporting for the month of August 2020.

These death totals, however, do not differentiate between deaths due to COVID-19 and deaths from other causes. For instance, the state data shows 10,687 people died in nursing homes from March through August. According to the state’s coronavirus data at the end of August, 3,733 of these people had from COVID-19.

This woman’s family was left to wonder: why wasn’t their loved one’s death being counted in the coronavirus data?

“It’s left a huge whole in my heart,” the family member said.

Data entry errors

KXAN reached out to HHSC about the discrepancy concerning this facility.

A spokesperson for the agency clarified they were made aware of a COVID-19 death at this home.

“There are occasionally data entry errors given the amount of data that changes and updates daily. With that said, this was reported to HHSC and should have been listed. We are in the process of getting the data updated and corrected,” the spokesperson said.

As of Tuesday, the error hadn’t been corrected.

“It’s not like I can call these people and say, ‘Hey, my mom died,” the family member said. “It’s disbelief, really.”

The HHSC spokesperson said they “rely” on the numbers provided by facilities. Those statistics are then manually entered into HHSC’s system.

“When we see larger increases from day to day, we follow up to ensure the data is as accurate as possible,” they said. “These case counts posted to the HHSC website reflect data two weeks prior to the date of posting to allow time for a review of the data so that clerical or reporting errors can be corrected.”

The also pointed out each data set features a note that reads, “The data is provisional and subject to change.”

KXAN investigators asked HHSC how many other data entry errors there could be in the current case counts, but hasn’t received an answer.

Beyond the data

Advocates like Brian Lee worry about the implications of underreporting or misleading data.

“Mitigation strategies really hinge on this data: where PPE’s are deployed, where testing is deployed,” Lee said. “It really sends out like a red alarm for the public when the state is chalking this up to a data entry error, when we know this data is so vitally important — not just for families to know it, but for the lives of their loved ones who are living in these facilities.”

He leads the non-profit Families for Better Care, fighting for improved resources for residents in long-term care facilities. He notes it will be hard for public health officials to distribute many of these resources if even portions of the data is incorrect.

“Lives literally hinge on this data, so if they cannot get this accurate and display a clear, concise picture — a credible picture — of this data, you just throw your hands up and go, ‘What’s the point?'”

The family who pointed out the discrepancy worries there are others like them.

“Now that she’s gone, if we can help any other family protect their loved one that happens to be in an assisted living facility or nursing home in Texas, or anywhere,” they said. “You need to be in the loop. You need to know, is there anyone else infected?”

Senior Investigative Producer David Barer contributed to this report.