U.S. health data is disappearing—with potentially serious consequences

Joel Gurin The work that we’re doing now is part of an effort being led by the Robert Wood Johnson Foundation, which has become really concerned about the potential for some real disruptions to what you can think of as the public health data infrastructure. This is the data on all kinds of things, on disease rates, on social determinants of health, on demographic variables that’s really critical to understanding health in this country and working to improve it for all Americans. And we’ve seen a lot of changes over the last year that are very troubling. There are attempts to make some of this data unavailable to the public. Some major research studies have been discontinued. There’ve been deep cuts to the federal staff that are responsible for collecting some of this data. And just cuts to research funding, for example from the NIH overall. So it really adds up to a cross-cutting risk to the infrastructure of public health data that we’ve relied on for decades.

Terry Gerton Talk to us about why this data is so important, why it’s the government’s responsibility, maybe to keep it up to speed, and whether it’s a policy shift that’s driving this, or is it just individual actions?

Joel Gurin From what we can tell, it’s, I would say, a number of policy decisions that are all related to how the Trump administration sees the president’s priorities and how they want to implement those. So it’s not like we’ve seen a wholesale destruction of data, but we’ve see a lot of kinds of targeted changes. Anything related to DEI, to diversity issues, to looking at health inequity. That’s at risk. Any kinds of data related to environmental justice or climate justice — that’s at risk. Data related to the health of LGBTQ people, particularly trans individuals, that’s at risk. So we’re seeing these kinds of policy priorities of the administration playing out in how they relate to the collection of public health data. And this data is critical because government data, number one, some of these data collections are expensive to do and only the government can afford it. And also federal data has a kind of credibility, as a kind centralized source for information, that other studies don’t have. For example, the administration recently discontinued the USDA’s study of food insecurity, which is critical to tracking hunger in America. And it’s going to be especially important as SNAP benefits are cut back. There are other organizations and institutions that study hunger in America. The University of Michigan has a study, NORC has a study. But the federal study is the benchmark. And losing those benchmarks is what’s troubling.

Terry Gerton One of the recommendations, just to skip ahead, is that more states and localities and nonprofits collect this data if the federal government is not going to. But what does that mean for trust in the data? You mentioned that federal data is usually the gold standard. If we have to rely on a disperse group of interested organizations to collect it, what happens both to the reliability of the data and the trust in data?

Joel Gurin It’s a great question, and it’s one that we and a lot of other organizations are looking at now. One of the things that’s important to remember is that a lot of what we see as federal data actually begins with the states. It’s data that’s collected by the states and then fed up to federal agencies that then aggregate it, interpret it and so on. So one of questions people have now is, could we take some of that state data that already exists and collect it and aggregate it and study it in different ways, if the federal government is going to abdicate that role? There was some very interesting work during COVID, for example, when the Johns Hopkins Center, Bloomberg Center for Government Excellence, pulled together data from all over the country around COVID rates, at a time when the CDC was not really doing that effectively, and their website really became the go-to source. So we have seen places where it’s possible to pull state data together in ways that have a lot of credibility and a lot impact. Some of the issues are what do the states really need to make that data collection effective? So regardless of what the federal government does with their data, they need mandates from the federal government to collect it, or it won’t be collected. They need funding. About 80% of the CDC’s budget actually goes to state and local, and a lot of that is for data collection, so they need that funding stream to do the work. And they also need networks, which are starting to develop now, where they can sort of share expertise and share insights to make data work on a regional level.

Terry Gerton I’m speaking with Joel Gurin. He’s the president and founder of the Center for Open Data Enterprise. Well, Joel, then let’s back up a little bit and talk about the round table and the research that led into this paper. How did you do it and what were the key insights?

Joel Gurin So one of the things that our organization, Center for Open Data Enterprise, or CODE, does is we hold roundtables with experts who have different kinds of perspectives on data. And that’s what we did here with Robert Wood Johnson Foundation support. We pulled together a group of almost 80 experts in Washington last summer, and we led them through a very highly facilitated, orchestrated set of breakout discussions. We also did a survey in advance. We did some individual interviews with people. We do a lot of our own desk research. The result is a paper that we’ve just recently published on ensuring the future of essential health data for all Americans. You can find it on our website, odenterprise.org. That’s odenterpreise.org. If you go to our publications page and do the health section in the drop-down from publications, you’ll find it right there, along with a lot of other op-eds and things we publish related to it. Putting out this paper was really the result of pulling together a lot information from literally hundreds of pages of notes from those breakout discussions as well as our own research and as well is tracking everything that we could see in the news. But one of the things that I want to really emphasize, in addition to the analysis that we’ve done of what’s happening and what some of the solutions could be which is that’s a fairly lengthy paper and hopefully useful, we’ve also put together an online resource hub of what we think are the 70 or so most important public health data sets. And I want to really stress this because we think it’s actually a model for how to look at some of the issues affecting federal data in a lot of areas. We found that by working with these 80 or so experts and doing additional research and surveying them and talking to them, there’s a lot commonality and common agreement on what are the kinds of data that are really, really critical to public health and what are those sources. Once you know that, it becomes possible for advocates to argue for why we need to keep this data and how it needs to be applied. And it’s also possible to ask questions like, for this particular kind of data, could somebody other than the federal government collect it? And could we develop supplemental or even alternative sources? So we really feel that that kind of analysis, we hope, is a step forward in really figuring out how to address these issues in a practical way.

Terry Gerton That’s really helpful and also a great prototype for, as you say, data in other areas across the federal government that may or may not be getting the visibility that they used to get. What were the key recommendations that come out of the paper?

Joel Gurin Well, we had recommendations on a couple of different levels. We had recommendations to, as we talked about before, to really look at state and local governments as important sources of data. They are already, but could more be done with those? This includes, for example, not just government data collections the way it’s done now, but using community-based organizations to help collect data from the community in a way that ultimately serves communities. We’re also very interested in the potential for what are being called non-traditional data sources, like the analysis of social media data and other kinds of things that can give insights into health. But I think probably the single most important recommendations at the federal level are to continue funding for these critical data sources and to recognize how important they are and to really recognize the principle that there’s an obligation to understand health and improve health for all Americans, which means looking at data that you can disaggregate by demographic variables and so on. I want to say we have had some really positive signs, I think, from Congress, particularly on the overall issue of supporting health research. And when we talk about NIH research, remember some of that is really lab medical research, but a lot of it is research on public health, research on social factors, research on behavioral factors, all of this kind of critical work. And the president’s budget actually recommended a 40%  cut in NIH funding, which is draconian. The Senate Appropriations Committee over the summer said, we actually do not want to do that, and in fact, we want to increase the NIH budget by a small amount. So I think what we’re seeing is there’s a lot of support, bipartisan support in Congress, for protecting research funding that ultimately is the source of a lot of the data we need. Some of this is just because it’s a shared value, and some of it is because those research dollars go to research institutions in congressional districts that representatives and senators want to see continue to be funded. So I think that basic fear that a lot of us had a few months ago, that research was simply going to be defunded, I think, that may not happen. And I would hope that Congress continues both the funding and also support for not only some of this research funding, but agencies like the National Center for Health Statistics, or the Agency for Health Research and Quality, which have been under threat, to really recognize their importance and sustain them.

Terry Gerton One of the challenges we might face, even if Congress does appropriate back at the prior levels, is that much of the infrastructure has been reduced or eliminated, and that’s people and that’s ongoing projects. How long do you think it will take to kind of rebuild back up to the data collection level that we had before, if we do see appropriation levels back to what they were?

Joel Gurin I think that’s a really critical question. You know, early in the administration, 10,000 jobs at HHS were cut, about a quarter of those from the CDC. But there has been some pushback. There was an attempt during the shutdown to do massive layoffs in HHS and CDC. The courts ruled against that. So I’m hoping that we can prevent more of that kind of brain drain. It will take a while to restaff and really get everything up to speed, but we think it’s doable and we hope we can get on that path.