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Health Affairs This Week places listeners at the center of health policy’s proverbial water cooler. Join editors from Health Affairs, the leading journal of health policy research, and special guests as they discuss this week’s most pressing health policy news. All in 15 minutes or less.
Hello, hello, and welcome to Health Affairs This Week. I'm your host, Jeff Beyers. We're recording this on 07/24/2025. I know I've mentioned it a couple times, but Health Affairs released its second insider trend report. The first one was on artificial intelligence and health care.
Jeff Byers:This new one is titled the health care workforce, a challenge in sustainability. We also have an exclusive event on 03:40 b for insiders with Saya Nikpei on August 20. Join us. And today to discuss the disappearance of public health data and its potential consequences, we have on the program Aaron Carroll, the president and CEO of Academy Health. Doctor Carroll, welcome to the program.
Aaron Carroll:Thanks so much for having me.
Jeff Byers:So, doctor Carroll, you wrote in 2017 a book called The Bad Food Bible. You probably have heard of the recent news about adding cane sugar back into Coca Cola. So in that you, you know, wrote this book, do you have any thoughts on this?
Aaron Carroll:I do. I think the idea that we're going to make soda suddenly healthy by switching from high fructose corn syrup to cane sugar is missing the mark entirely. It's still soda. It's still a sugar containing beverage, and added sugars are some of the worst things we can do in our diet. In fact, when I wrote the book, it was mostly talking about how things aren't as bad as they seem, but added sugar is is one of those where it pretty much is as bad as it seems.
Aaron Carroll:So I I think it we're wasting a fair amount of time on that. Maybe it might taste better. I don't know.
Jeff Byers:Mhmm. Mhmm. And I would be remiss. So, 2017, unfortunately, is, eight years ago. While we're on the subject, is there anything that you, you know, you may have been studying that you would you would update?
Aaron Carroll:No. It's funny because I get asked all the time, especially because mostly about alcohol because, you know, they'll come up with new warnings or new but there's very little new research. What happens is they just reanalyze old stuff. We we probably could use some good randomized controlled trials, but there just aren't that many done in nutrition. We we need to do a much better job in the way we study food.
Jeff Byers:Fair enough. Good to know. Check out the Bad Food Bible if you haven't already in these last eight years. So moving forward, you wrote a forefront piece in July, 2025 titled When Public Data Disappear, What We Lose and Why It Matters. So to start the conversation on this, I thought it might be helpful to outline what the profession of health researchers look like today.
Jeff Byers:You know, generally, does the data look like?
Aaron Carroll:Yeah. I mean, first of all, I should say it's not even just health researchers. It's also practitioners. It's it's people who are practicing public health. All kinds of people use data, and and they use it every day, whether they're studying disease trends or evaluating programs or advising policy.
Aaron Carroll:So many people's work depends on data that are timely, accessible and comparable across regions and populations. And without it, they can't do basic things like identify gaps in care, track the success of interventions, or evaluate whether policy changes are helping or harming people. So we got teaching, mentoring, grant writing, publishing, caring for people, all of that build on the foundation of evidence.
Jeff Byers:How do they engage with this data regularly?
Aaron Carroll:I mean, sometimes it's literally just going to websites and looking stuff up to see what's going on. Sometimes it's reports that get put out periodically that compare in a variety of ways, different populations or different regions of the country. Sometimes they are used in monitoring programs that they might create themselves that upload that data and then track it over time to see if there are changes or things that people should be worried about. You can even imagine in the future that, you know, artificial intelligence could be used to monitor in the background all of this data that exists to see if there are connections that can be made and if decisions can be helped by having all of that in a way that can be analyzed. Unfortunately, if you take the data down or you change it without people knowing, that makes all of that much, much more difficult, if not impossible.
Jeff Byers:And so sitting from where you sit, you know, my colleague Rob Lott had Thomas Dobbs on his podcast, The Health Policy, and Thomas kind of painted a a harsh, I would say, a harsh realistic, picture of the public health landscape when it comes as a profession. Like, sitting where you sit, how does the field of public health research look to you in its current state?
Aaron Carroll:I mean, honestly, it's it's in a tough spot at the moment. The tools and the evidence that make public health effective are under stress, not just from budget cuts or political disagreements, but from the quiet dismantling of the very infrastructure that researchers and others rely on. So many people are doing critical lifesaving work, but we keep asking them to do it with fewer tools, more bureaucracy, and less clarity about what they can even access. And all of that makes what was already difficult, painstaking, underfunded work much more difficult, if not impossible.
Jeff Byers:Yeah. Do you get a sense of, like, how burnout or just leaving the field has been, what it's looked like in the past couple of years?
Aaron Carroll:I think, you know, in the past couple of years, it's hard. COVID took a real toll on a lot of people both working in public health, and working in in, you know, health care for that matter, as well as those who do research. A lot more anger, a lot more public attacks, you know, stuff that we'd never really seen before happening. But doing research was never an easy job to begin with. It's very hard to fund.
Aaron Carroll:It's very hard to maintain. It's very hard to keep it going. It's very hard to make a difference. And a lot of the changes that have occurred in the last six months, again, have only made that much more difficult itself. And as people have seen disruptions in their funding, disruptions in how even universities are treated, you know, changes in how grants can get reviewed or what might happen.
Aaron Carroll:A lot of this has removed some of the stability and the assuredness that made The United States special, and that that's tragic. And, hopefully, we'll be able to fix it.
Jeff Byers:So you mentioned the loss of potential some stability and some anger, especially when you look to some of the actions, within the last six months. So looking at your article, your article brings up and writes about the potential consequences for losing some of this public health data, which I imagine can contribute to some of that anger or feeling of, like, a loss of, stability. You write that current federal action undermines and creates inefficiencies that amount to de facto data suppression. So I know you cite PRAMs as an example in the article.
Aaron Carroll:That's a great example.
Jeff Byers:Yeah. If you could give listener you know, I encourage listeners to read the article, but if you could give an example, that'd be great.
Aaron Carroll:So, PRaMS is the pregnancy risk assessment monitoring system. And, you know, it sounds fancy, but really what it's doing is gathering data that are collected in a variety in basically all states across the nation and putting it in one place where you can do comparisons. Using prams, West Virginia was able to see that, hey, wait a minute. Our smoking rates amongst pregnant women are much higher than other states, and this is something we should probably focus on. And they did.
Aaron Carroll:And they were able to cut smoking and pregnancy from twenty five percent to ten percent in just a few years. That's the kind of change that saves lives. And it happens because you could see that the data to understand the problem clearly and act on it. But now those data are harder to access. And while they may exist in a state and state and state, researchers can't easily compare them across states because the government's not showing that or hadn't been showing it in a way that everyone can do.
Aaron Carroll:What used to be in a national resource has become fragmented. And again, that's not just inconvenient. It's dangerous. If you can't see the full picture, you risk missing problems entirely.
Jeff Byers:Yeah. I don't wanna talk about that fractious nature in a little bit, but when you're talking about that, like, not getting the full picture entirely, I always have a like, I might be an archivist by nature of, like, trying to have, like, good data file management for whatever I'm doing. Like, public health data fits into that quite well where like, I'm not sure if you can get the implications over time regarding unified clean data sets. And like, if you alter them in a way or change them slightly, what are the implications of that?
Aaron Carroll:I mean, it has huge implications. You know, just even small changes to how we gather data, in terms of the questions that we ask can have massive implications on what we're following. In fact, we've probably had, you know, some instances in the last decade or so where we even made mistakes and thought there were real changes happening in the world that were just because of changes in how we collected the data or the questions we ask. It's very hard to gather lots of data and put it together in a way that you can use. And fragmented data mean fragmented responses.
Aaron Carroll:Researchers have to spend significantly more time trying to get access to the data. They spend way more time cleaning messy files and harmonizing definitions and putting things together in ways that make sense because you may measure something differently over here than we do over there. And this work that used to be done once federally and then shared with everyone now has to be done individually. And over time, that's gonna slow down research. That's gonna increase costs.
Aaron Carroll:It's gonna raise the risk of errors. It also means that smaller teams or community organizations that don't really have resources can get shut out altogether if they don't have the skills to do all of that data gathering, cleaning, harmonizing, and everything else. And that's not just inefficient, and it's not just a waste of time and money. It's inequitable.
Jeff Byers:You know, your thoughts made me think of a question is that, do you have any data horror story yourself that you could share of, like, you know, whether it's someone changing the name on one cell and that, like, changes the whole dataset? Have you
Aaron Carroll:I mean, I just just in my own research, I remember on more than one occasion where, we were trying to do research on asthma, and we were trying to pull the data from a variety of different electronic medical record systems. And it turned out that in one of them, they had miscoded it as a lower respiratory disease as opposed to an upper respiratory disease. And that meant we got exactly wrong, like what was going on. And we realized every all the work we'd done was 100% right, and it was horrifying. And you just realize that with just a small thing like that happening because we were relying on sort of a couple of different systems and a mistake had been made deep down the line that you could no longer trust what you were doing.
Aaron Carroll:And it's important to do that kind of cleaning and find it, but doing it at a big central level where real experts are doing it once so that everyone can trust that the data that we have are real and actionable and verifiable makes so much of a difference. And the idea that everyone can just do this on their own and we don't need the big federal infrastructure belies a complete misunderstanding of how easy it is to screw this up.
Jeff Byers:Yeah. My apologies for this question in advance and to put you on the spot. But, you know, from your perspective, how long of a tail might this have? So just changing data can have implications for, you know, data management down the gears, and then trying to, you know, counteract what you did a couple years ago has another, you know, set of change management years. Is there any what's your sense of, like, how long this will take to to stable out?
Aaron Carroll:I mean, it's hard to say because some things will be easier than others. Some things are just, hey. We the states are still doing what they have always been doing. And so if we can just turn it back on at a federal level, they can start submitting the data again, and we know exactly how to clean it up, and we can probably get everything going again. But some of these datasets rely more on, you know, questions and live things being asked or surveys being done.
Aaron Carroll:And disrupting that or making changes to that can have massive implications that we might not see for quite some time. In addition, if we make changes such as removing the expertise on how to clean, put this all together, make it pretty so that everyone can use it because we start firing people indiscriminately from the government or, you know, driving them out of public service into the private sector. That's harder to replace at all, because some of these systems have been in place for decades. And there are people who have real experience and probably should train the next generation of people who and how to do this. And if we lose all of that, that'd be very, very hard to replace.
Aaron Carroll:Further, some of the stuff's reappearing, but we're just not sure it's right because it looks slightly different and we can't figure out is that intentional or not intentional. There's a certain amount of trust that has to be built over time in how these things get put together, and removing or weakening that amount of trust also has real implications.
Jeff Byers:Yeah. And also pretty intangible ones in some ways. Yeah. Yeah. So you've talked about how this might affect the health researcher profession over time, but going back to that trust Yep.
Jeff Byers:How might patients come to view public health data or, like, even physicians that, like, whether to recommend getting the flu vaccine or something along those lines?
Aaron Carroll:Yeah. Yeah. I mean, don't even want to just I agree with you. I don't even want to just say if it's just researchers. If researchers and public health officials and clinicians and tons of people can't access the data they need or trust in its completeness, science and health suffer.
Aaron Carroll:Everyone is going to become more cautious, less responsive, and more concentrated, among those with the resources to navigate the red tape. So the only people who are going to be able to do the work or get benefit are those who really can overcome all of these barriers. And the shifts in who can do research and what gets studied could be massive. Patients can they start to see fewer breakthroughs, fewer improvements in care, and certainly less evidence based policymaking. The public could lose trust, not because the science is wrong, but because the systems that support it are failing.
Jeff Byers:Well, doctor Aaron Carroll, as we wrap up, have a couple more questions, but point listeners to the forefront article that you wrote. We'll put that a link to that in the show notes. In March, Academy Health released a five year strategic plan with goals including to elevate the profession and broaden your region. I thought this was interesting, and it's no secret that once relied upon distribution channels ten years ago are crumbling. So web traffic is going down.
Jeff Byers:Impressions from social media for the most part is going down, especially in the digital space. How are you navigating these goals in today's fractious media and political ecosystem?
Aaron Carroll:Well, I mean, we've never been naive about politics in general ever, but we've always believed that evidence can transcend that. That's why we've remained nonpartisan even while stepping into this lawsuit. We're not doing it to make a political point. We're doing it to defend the infrastructures or the infrastructure that makes science possible. So at Academy Health, our strategy is to elevate the profession by standing up for the tools researchers need, by finding new ways to communicate their value, and by partnering with allies across a variety of sectors and ideologies to make the case that data matter.
Aaron Carroll:You can't improve what you don't measure, and the measurement is super important.
Jeff Byers:You mentioned a lawsuit. We did not talk about it in this episode yet. So do you wanna just mention that real quick? It's in the forefront article. But
Aaron Carroll:Yeah. The lawsuit is to fight for data that is either mandated or legislatively required to be put back, that it just shouldn't be removed when when it should be there. We didn't join this lawsuit lightly. We joined it because the stakes are real, and this isn't about politics. It's about lives.
Aaron Carroll:It's about whether researchers, doctors, and policymakers have the information they need to do their jobs. Because when we lose data, we lose the ability to govern effectively and fairly. We lose the chance to save lives, and that's not acceptable. And we at Academy Health are gonna keep fighting to make sure we don't lose those tools quietly.
Jeff Byers:Last question before we go. We're talking about the public health profession. So, I was aware of you back in the Twitter days when you were very active on Twitter at the time. I I have not on Twitter or X too much these days anymore. But I wanted to ask you, like, there I felt there was a public health community on that.
Jeff Byers:Where are you finding that public health community now if it's not on Twitter?
Aaron Carroll:I I, you know, I think it's trying to rebuild itself on blue sky. I see it probably most active on LinkedIn, although I find that, you know, LinkedIn isn't the easiest thing to navigate. But if I'm being totally honest, I think social media is hard to use in this area because I think the biggest problem we have right now is with trust and with addressing complex issues. And social media is not set up to do either of those two things. You know, trust takes individual interaction over time repeatedly.
Aaron Carroll:It's detail. It's retail. It's it's convincing people that you're, you know, that you're trying to do your best, that you hear them, that you're responding. That's not how we use social media. And complex ideas, everybody's looking for a single tweet or a single TikTok, which gets everyone to agree with what they're saying and gets them to change the behavior in the way that they want.
Aaron Carroll:That's not how behavior change work. That's not how change management works. And so I'm not sure where to go to to get what everyone is looking for when it comes to social media?
Jeff Byers:Well, when it comes to social media, yeah.
Aaron Carroll:I think if mean, no. I'm not tooting your horn here, but it's like, I actually think podcasts are what's gonna save us. It's the only format that's really available that allows for this kind of in-depth detail long form discussion where we can address real ideas and talk about them in ways that don't sound like sound bites. You're not gonna get that on cable news. You're not gonna get that on social media.
Aaron Carroll:You're not gonna get that in many places. I I really do think interviews and discussions like this are are what are gonna change things.
Jeff Byers:Well, thank you. Thank you. I also I don't know. I'm not gonna put words in your mouth, but social media is trash to me. I could talk more and more about that.
Jeff Byers:But doctor Aaron Carroll, anything else you wanna point listeners to while I have you?
Aaron Carroll:No. I mean, I I I hope that people are following the Academy Health situation report. It's something that we've been writing now a couple times a week just to inform people about what's going on with changes in data and changes in science and changes in research, especially health services and health policy research. Get on the mailing list. Stay involved.
Aaron Carroll:Stay active. Get informed. And we all need to work towards a better future.
Jeff Byers:Doctor Aaron Carroll, thanks again for joining us today on Health Affairs This Week. And if you, the listener, enjoyed this episode, please send it to the model crazy train hobbyists in your life, and we will see you next week.