Software helps safeguard scientific data from political interference

Drexel University professor Usama Bilal was alarmed when federal health agencies began taking down webpages and data portals earlier this year in response to President Donald Trump’s executive orders targeting diversity, equity, and inclusion programs and transgender identities.

But while many in the scientific community felt helpless, Bilal realized that his team had already built a tool that could help researchers access some of the scrubbed data.

Years ago, Heli Xu, one of Bilal’s colleagues at Drexel’s Urban Health Collaborative, had designed a piece of software to make it easier for researchers to use a wide-ranging data set kept by the Centers for Disease Control and Prevention. Called the Social Vulnerability Index, it utilizes U.S. Census data to predict how vulnerable communities are to disasters, pandemics, and other events that can affect residents’ health.

The SVI was one of the datasets taken down by the Trump administration in late January. Though it and other widely-used datasets are back online now, widespread uncertainty around the administration’s anti-DEI orders and ongoing legal challenges have researchers concerned that data they regularly consult could be pulled down again.

Xu’s software meant that the Drexel team had a backup copy of the SVI—and a method to easily search it. Now, Bilal and his colleagues are joining a growing number of national data organizations and university researchers in efforts to preserve and disseminate data that may be at risk in the future.

Their SVI search tool is available, for free, online. The Urban Health Collaborative’s LinkedIn post about the tool garnered more than 500 likes and was reposted 120 times—the biggest response to a post the center has ever received, said Bilal, an associate professor of epidemiology.

Bilal never expected to use his team’s software package to protect data from a president’s politically-motivated purges.

“Data is power. You can do so many things with data,” he said. “And if you control the flow of information with the flow of data, it’s another way of exercising excessive power. It’s worrisome.”

How researchers use the CDC’s health data

The SVI catalogs Census data on socio-economic status, race, housing, and transportation in communities across the United States. Researchers use it to understand how a given community could be affected by a large-scale health event like a pandemic; it can also aid research into income and racial inequities that affect people’s health outcomes.

For example, during the height of the COVID-19 pandemic, the SVI helped researchers determine that neighborhoods with high “social vulnerability” had fewer COVID test sites, more COVID cases, and more deaths, Bilal said.

“And it’s not only for COVID; we use [the SVI] to look at vulnerability to heat, floods, all of those kinds of things,” he said.

Bilal has long advocated for public access to data. During the COVID-19 pandemic, early data on the spread of the virus was scarce, and researchers clamored for more information on how it was affecting communities.

“It was through pressure from the media that health departments started releasing more and more open data,” he said. “But that was data that had to be created and released to the public. I never would have expected that data that’s already public would be taken down.”

Questions about data integrity

In an order directing the government to end DEI programs, the Trump administration has said that such programs are wasteful and discriminatory. Another order targeting transgender identities says, contrary to established scientific understanding, that the United States only recognizes “two sexes, male and female.” Data was removed by health agencies in response to these orders.

The Trump administration subsequently restored access to large datasets like the SVI and the Youth Risk Behavioral Surveillance System, which measures risky behaviors like drug use among high school students. Additionally, a federal judge granted a temporary restraining order requiring health agencies to repost data scrubbed from public-facing websites. But some scientists are worried that the integrity of that data has been compromised.

“Is the data they’re putting back up again the same data?” Bilal asked. “Hopefully, people have backups of that data, and we can compare it.”

He’s also concerned about ongoing research, particularly given the Trump administration’s executive orders targeting transgender Americans. On Tuesday, the health news outlet STAT reported that the CDC will no longer process data on transgender identities.

Such a change would have serious implications for a vulnerable population for whom data is already scarce, Bilal said: “We can only study the health of populations for which we have data.”

‘We may lose a generation of people working here’

Bilal and his colleagues are also grappling with the Trump administration’s threats to cut funding to research institutions and universities and a chaotic funding freeze, now temporarily stopped by a federal judge, that could have affected $1.5 billion in medical research funding in the Philadelphia area.

He fears the uncertainty will prompt some researchers to take their work to other countries, and others outside the country may opt to avoid pursuing research in the United States.

“People don’t know if they’re going to have a job tomorrow, there’s this uncertainty around whether grants are going to be canceled or not issued,” Bilal said. “We may lose a generation of people working here if this lasts long enough.”

He has felt encouraged by Drexel’s directives to press forward with his work and not preemptively stop research amid Trump’s executive orders and the ensuing legal challenges.

“The university has said, very openly, that we’re continuing our work unless [the National Institutes of Health] tells us to stop doing this work,” Bilal said. “If we stop doing the work beforehand, that’s just making it easier for [the Trump administration].”

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