Nearly four months ago, Gov. Charlie Baker signed an emergency COVID-19 bill that required more detailed data on who was hit hardest in the pandemic, including numbers on a COVID-positive person’s job, primary language and disability status.
Much of that data on people who have tested positive for COVID-19, meant to help health care experts better detect patterns and disparities, remains missing as of Thursday.
The latest batch, reported Wednesday, shows the state is missing occupational information on patients in more than 84% of positive COVID-19 tests since July 1, after the data collection bill was signed into law. More than 91% of the breakdown of positive tests by primary language is missing.
About 10% of the data on ethnicity and nearly 25% of the data on the race of people who test positive are missing.
When looking back at the data dating back to the start of the pandemic in March, a much larger portion of race, language and occupational data remains missing. And no data is published on whether people who tested positive have a disability.
“Chapter 93 requires the collection of data by industry, by occupation,” said Carlene Pavlos, executive director of the Massachusetts Public Health Association. “That’s just a shocking amount of missing data, and we’re not able to understand anything about the pattens about where people are getting sick.”
Most people who are asked about their occupation when getting tested for COVID-19 don’t seem hesitant to answer.
Of the 2.8 million COVID-19 tests conducted between July 1 and Sept. 29, the patients refused to disclose their occupation in less than 1% of the tests, according to the Ch. 93 data.
The exact number of refusals falls somewhere between 38 and 152 of the COVID-19 tests during that time frame. The state has only recorded 0 or “fewer than five” refusals since March 10.
Labs reported people refusing to provide occupation information in less than 1% of all COVID-19 tests administered between March 10 and July 1 as well.
Health and Human Services Secretary Marylou Sudders, who is also leading the state’s COVID-19 Command Center, said Tuesday the Baker administration warned that the state would need months to comply with the emergency law.
“If you’ve looked at the data, we’ve continued to increase the data fields that have been reported on, we will continue to comply with it, but anyone who has worked with system changes know you can’t just immediately put into place the systems and technology upgrades you need,” Sudders said during a news briefing in response to a reporter’s question.
While the governor signed the bill into law, she said, he also filed a bill that would authorize the Department of Public Health to fine entities up to $2,000 a day for failing to provide the data required by law. Among other things, it would also exempt independent senior living complexes from data reporting requirements.
“One of the things we said in the legislation we filed, which we would love to get, was that there is an onus,” Gov. Charlie Baker said Tuesday. He called fines a “much more effective tool to get the folks who actually have to give us the data to actually give us the data.”
In recent weeks, Baker has said the source of most clusters appear to be private gatherings, rather than occupational hazards. There have been some notable exceptions, most recently an outbreak at Brigham and Women’s Hospital in Boston.
“Most of our new cases, most of our clusters have involved unstructured, non rule-based gatherings, celebrations, parties that have taken place between and among people where there aren’t any rules,” the Republican governor said. “Part of what I think we’re trying to do here is recognize and understand that in many states, an emphasis on organized gatherings, organized play, organized indoor activity has actually not translated in those places into a significant increase in cases, but exactly the opposite.”
Baker has cited findings from contact tracers, but there’s no publicly available data that identifies the presumed source of COVID-19 spread even after contact tracers find it. The statutorily required information — data on the primary languages COVID-positive people speak or their jobs — is so underreported that public health experts say they cannot use it to verify or dispel any concerns about who is prone to exposure and where.
“When the state is suggesting it isn’t work sites that are points of the outbreak, it would be helpful to have some transparency in what they are seeing in the data. That is certainly something we’re not getting,” Pavlos said.
Massachusetts has not been immune to work-related COVID-19 transmissions. In April and May, scores of Walmart employees tested positive for the virus at the company’s Worcester, Quincy, Avon and Abington stores. One Quincy employee, Yok Yen Lee, died.
A report released in September by the Massachusetts Coalition for Occupational Safety and Health and the AFL-CIO union estimates 59 people have died from coronavirus-linked complications after potential exposure at work. At least 1,350 workers across 12 unions tested positive for the coronavirus, although those are not confirmed, but rather suspected to be work-related cases.
Also referenced in the report are the thousands of work-related complaints about COVID-19 enforcement to various state and federal agencies. At least 313 workplace complaints were made to Attorney General Maura Healey’s office that alleged employers failed to make symptomatic workers stay home between May and August.
While Baker says private gatherings are COVID-19 magnets, some residents are more vulnerable to workplace exposure because they are essential workers, and the risk compounds if they’re returning home to multi-generational homes or crowded units in densely populated cities.
Black, Latinx and Asian people are more likely to work in essential jobs and on the front lines than white residents. That puts them at higher risk of workplace exposure to the virus, according to the report.
In early September, Latinx residents made up 12% of the population but 30% of positive cases. Black residents made up 7% of the population but 14% of COVID-19 cases. In elder care facilities, 37% of the workers who died were Black, according to the report.
Disparities were especially high in cities that are predominantly Black and brown, such as Chelsea or the Mattapan, Hyde Park, Dorchester and East Boston sections of Boston, that have high numbers of essential workers.
These statistics cited in MassCOSH’s report, however, point to correlations compiled through surveys, news articles and complaints databases. It’s unclear how many people of color were exposed to COVID-19 through work. The lack of occupation and race/ethnicity data that the state is required by law to publish only makes it harder for researchers and labor rights advocates to easily track correlations and look into why they exist, said Jodi Sugerman-Brozan, executive director of MassCOSH.
“For me, work is a key way in which the pandemic is spreading,” Sugerman-Brozan said. “By not understanding the occupation, industry or employer … we are missing a huge piece of information that would allow us to better identify trends, protect workers and prioritize [worker protections].”
While the state is required to track occupation and other information, not everyone fills it out, Sugerman-Brozan said.
When asked about the gaps, Sudders said the Baker administration warned the Legislature that it would take three to four months for health officials to update the data even though the COVID-19 law took effect immediately.
Baker went on to sign the bill into law “with a clear understanding that we were unable to immediately comply,” Sudders said.
There wasn’t a conference committee for this bill, and it is unclear which key legislators were warned of a three to four month delay. The Executive Office of Health and Human Services did not respond to questions about who was notified.
Rep. Ruth Balser, the lead sponsor in the House who focused on data collection for elder facilities, said she never spoke with Sudders or the Baker administration about the law. The Newton Democrat said she wasn’t told to expect a delay.
House Speaker Robert DeLeo’s office did not say whether he was told about the delay. His office said in a statement, “it is up to the administration to implement the law.”
Senate President Karen Spilka’s office didn’t immediately respond to an inquiry.
Sen. Julian Cyr, the lead Senate sponsor, did not answer a question about whether he was warned about a delay., but he noted in a statement that issues with the public health system and data collection were known well before the pandemic.
“The fragmented nature of local health and various electronic health records mean that it can be difficult to get consistent health surveillance data in all areas,” the Truro Democrat said in a statement. “In crafting the legislation, we aimed to capture as much data as possible to inform the commonwealth’s ongoing response to COVID-19 … Our expectation is the Baker-Polito Administration will provide as much data as possible given inherent limitations.”