TAMU study on big data shows most Americans want eased access to advance public health

COLLEGE STATION, Texas (KBTX) - It’s been a controversial issue for some time now - how strict should laws protecting our privacy be when they could be used for public health research?

Current U.S. data protection laws make it difficult for researchers to use large sets of personal data to enhance the public good. A recent study done by Texas A&M School of Public Health Assistant Professor Cason Schmit shows most Americans support their data being used for that purpose.

“It looks like people tend to prefer that their information is being used for more altruistic purposes rather than the self-serving purposes of whoever it is that’s using it,” Schmit said.

When people think about public health, Schmit says they tend to think about biological things, like genetics or diseases. He says the causes of those things, however, are oftentimes not biological at all, such as economic or social factors.

“As it turns out, we have a whole lot of data that communicates these social and economic factors that affect our health,” Schmit said. “Very few data privacy laws make exceptions to use that information to promote population health. Generally, all U.S. data protection laws protect data differently depending on what type of data we’re talking about, who has it, and what they’re intending to do with it.”

Schmit points to the opioid epidemic as one of the most pressing gaps in the way data is protected. He says substance abuse treatment records are protected very restrictively. While Schmit acknowledges there are a number of good reasons why that data should be protected, he also says there should be some sort of express public health permission to use that data to help end an ongoing public health crisis.

“We can’t use any of the information that we have related to this crisis to fix it,” Schmit said. “This law has been cited as a major barrier to addressing the opioid epidemic.”

Schmit’s team created 72 different data reuse scenarios and sent them to 500 people in a nationally representative sample. Participants would select which scenarios they preferred over others. These scenarios all differed in who is using the data, what type of data is being used, and why. They did this a number of different times and ran a statistical simulation to analyze the results.

“The most preferred data reuse scenario is a researcher using education information to promote the population health, Schmit said. “Ironically, that most popular data use is actually illegal under the Family Education Rights and Privacy Act (FERPA) laws that protect education information.”

Schmit says the least-preferred data reuse scenario is businesses using economic data for for-profit purposes.

“That is a very, very loosely regulated area and ubiquitous in our society,” Schmit said. “When you look at something that is widely permitted under U.S. data protection laws being the thing that the public least prefers against this data use that is currently illegal but they most prefer it, it really highlights how backward the current U.S. data protection framework is.”

KBTX asked people locally if they agree with Schmit’s findings. Most of them said they would like to see their data used more to improve society, but only if privacy laws were loosened in a precise, specific fashion.

“When you loosen the laws, it opens up a basically Pandora’s Box,” College Station resident Kierstyne Brown said. “They can do basically what they want when they want, but they’d have to be able to spell it out, like as to what they’re going to use my stuff for. What are you going to use it for? Where is it going to go?”

“I would like my personal data being used to make advances for maybe scientific, like the pandemic, or stuff that’s going to really benefit the people and the community, instead of for advertising purposes to make sales on Facebook and that kind of thing,” Bryan resident Jessica Mendez said.

“Depending on the purpose, if it’s for a public health purpose, and maybe it was anonymized, then yes,” Katie Stober, who also lives in Bryan, said.

Schmit says his study also showed that people tend to care more about how their data is being used over what type of data is being used, such as economic, educational, or health data.

“The what for me is important as well,” Stober said. “There’s so much data that’s already public, you can find out a lot about someone. I would still say the ‘how’ it’s used is still more important than the ‘what,’ though.”

Schmit says he thinks the country will end up looking at a comprehensive data protection framework that regulates all data under a common set of rules that are more clear and transparent to data users. He says the Federal Trade Commission, the tech world, and public health professionals alike have all expressed some degree of support for this.

“Our data show that the public really supports using information for public health and research purposes,” Schmit said. “One of the very first things we can ask our policymakers to do is to look at ways they could include data-use exceptions for public health purposes and research in data privacy laws.”

To read Schmit’s study in its entirety, click here.

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