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Federal agency is asking hospitals for tons of data. Experts say that raises urgent questions

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The Trump administration wants more data from hospitals across the country. And it’s having a federal agency that generally tracks injuries from consumer products collect it.

The Consumer Product Safety Commission has been trying to get hospitals to share information with a third-party contractor — and that includes personally identifiable information about patients.

But as Darius Tahir reports, the move is drawing scrutiny.

Tahir is a correspondent focusing on technology at KFF Health News. He and some colleagues have written about this.

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KFF
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Handout
Darius Tahir

Full conversation

MARK BRODIE: Darius, can you describe what this agency is demanding of hospitals?

DARIUS TAHIR: Myself and my two colleagues, Amanda Seitz and Maya Goldman, who are both fantastic, learned that the Consumer Product Safety Commission, which is responsible for making sure our everyday products are safe, right? So we don't want kids swallowing batteries from toys, for example. We don't want lead on our toys, to take another example.

To do its job, historically it's relied on data from emergency rooms, from a selection of hospitals, such as Henry Ford Health in Detroit or Sanford Health, which is in the Dakotas. And it's had an interest in expanding that sample size to pick up on signals that are outside of this narrow geographic subset of the country.

And in doing that, it's demanded data using legal authority that is a very strong lever they're trying to use. And it's trying to go all across the country to get this data. That in of itself might not necessarily be a problem, but they want to use, apparently, artificial intelligence. They want the data to be de-identified, and they're asking for a huge spectrum of data. They're not necessarily just asking for data that looks like it's connected to some of these problems you might have with everyday devices, but it's also asking for data related to vaccine injuries, for example, or related to suicide attempts.

And so this is kind of leading a lot of the hospitals, privacy experts and former CPSC officials to step back and say, "Hang on. Is this really the way you want to go about this? Is this really a good idea?"

MARK BRODIE: What is the justification for the Consumer Product Safety Commission to need to know about things like vaccines or suicide rates?

DARIUS TAHIR: That's a great question. My colleagues and I uncovered a manual, a handbook about how this program is supposed to be administered. And it sort of said, "We don't necessarily need names. We don't necessarily need birthdays. If we need identifying information, we're going to follow up in certain follow-up investigations, which are a small subset of the overall data we've gotten to."

And so that's kind of leading to these questions about, why exactly do you need all this data? Why do you need this data in this specific form? Is this data going to be safely kept and maintained and not leaked? So it's occasioning all of these very urgent questions.

MARK BRODIE: You also report that there's a private company that has been contracted to collect this data. How big of a concern is that among folks who maybe are a little skeptical of what's going on here?

DARIUS TAHIR: It's definitely a concern. The agency says that the contract that they have signed with this company is going to protect some of these problems, but they're not making the contract public, excuse me. And so that's also questioning whether things are being handled appropriately.

MARK BRODIE: You mentioned that the federal agency will be using AI in this project. Do we know in what ways they'll be using AI?

DARIUS TAHIR: They haven't been entirely clear. One of the officials affiliated with the agency went to a toy industry conference in February and said that "these AI-enabled workflows are going to help us to improve the quality and quantity of injury surveillance data, while also building up a digital infrastructure to handle a massive new volume of electronic health records."

So it's not entirely clear exactly what that will entail or exactly what the current plans are, but they've kind of touted this idea as something that might be helpful to them.

MARK BRODIE: Do we know what the CPSC plans to do with all this additional data that it wants?

DARIUS TAHIR: So they are, in general, positioning this as part of their traditional responsibilities of making sure the consumer products we all use in our daily lives are safe to use, right? And there are often lots and lots of recalls of various products ranging from LED lights to the batteries in off-road motorcycles, right? There are all sorts of these products that we use that we just kind of plug in or turn on and don't necessarily think like, "Oh, this could be defective," or "This could be a problem," right? So it is an important public health role that they play. The question is, how exactly do they administer that? Is the administration kind of consistent with privacy and other imperatives? And how much data are they asking for that's consistent with that job, right? Do you necessarily need vaccine or suicide data to be able to tell that, for example, a pool drain is safely assembled?

MARK BRODIE: What has been the response of hospitals and other healthcare providers to trying to, as you say, expand maybe the geographical network, but also the types of data that this agency is collecting?

DARIUS TAHIR: So that's gathering steam, and we hope to have a report on that. But our reporting is that they're not happy to be shipping off this data to the federal government without these protections.

MARK BRODIE: All right, that is Darius Tahir, a correspondent with KFF Health News. Darius, thanks so much.

DARIUS TAHIR: Great. Thank you, and have a great morning.

KJZZ's The Show transcripts are created for audience accessibility. Transcripts are created on deadline with the assistance of AI tools and then edited, and may not be in their final form. The authoritative record of KJZZ's programming is the audio segment.

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Mark Brodie is a co-host of The Show, KJZZ’s locally produced news magazine. Since starting at KJZZ in 2002, Brodie has been a host, reporter and producer, including several years covering the Arizona Legislature, based at the Capitol.