The Future of Health Care Research: ‘Federal Funding Really Is Irreplaceable’

Dan Gorenstein (DG): I’ve been a health care reporter for more than a decade. First at the public radio show Marketplace and now here at Tradeoffs.

I’ve covered the roll out of the Affordable Care Act, the push to make health care prices more transparent, the debate over whether Medicare should cover breakthrough treatments for Alzheimer’s or Wegovy and Ozempic for weight loss.

All of those policies were deeply influenced by decades of studies on how we make our health care system work better.

That research is now at risk.

news montage: DOGE has been making cuts at the NIH, or National Institutes of Health. We’re talking about research on maternal health outcomes, cervical cancer, child suicide. The cuts are being described as a War on Science and have raised major concerns for health leaders.

DG: After the Trump administration called to cut federal health research funding by 40%, I started to wonder what that kind of reduction would mean for this work that’s informed so much policy over the years.

So today, a conversation about what health care research has given us, what these cuts could cost us, and what could be changed to make this field of study better.

From the studio at the Leonard Davis Institute of the University of Pennsylvania, I’m Dan Gorenstein. This is Tradeoffs.

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DG: Hey, Aaron. Good morning. 

Aaron Carroll (AC): Good morning. How are you? 

DG: I’m doing okay. Thank you. How are you? 

AC: Doing all right.

DG: Aaron Carroll is a pediatrician, a researcher, and the president and CEO of the nonpartisan AcademyHealth in Washington DC.

AC: We are the professional home for health services and health policy researchers, and we’re all about trying to create the data and evidence base to improve health.

DG: So, Aaron, for the first part of the conversation, I really want you to help me and our audience understand the potential impact if the Trump administration cuts billions of dollars from this kind of health care research. And in the second half, I want to get your take on the problems that you see in this field, because I know there ARE changes that you would like to see.

AC: Yep.

DG: You game for this, sir?

AC: Absolutely, let’s go. 

DG: So let’s start with the basics. How do you define health services research because it’s kind of a squishy term, at least in my mind, that a lot of people probably are a little unclear about.

AC: Yeah, and I feel like it’s one of those if you ask ten health services researchers, you’d get 11 different answers. So health services research is the science of how we actually deliver care: what works, for whom, and at what cost? You know, when we think about biomedical research, we’re usually thinking about discovering new drugs or discovering new devices.

But health services research is about making sure that those discoveries actually reach people effectively, safely and equitably. We think of health services research as the bridge between science practice and policy. And without that, the health system fails.

DG: I really like this. Health services research is this bridge between science practice and policy. 

AC: Mhm.

DG: Why is that bridge an important thing to have?

AC: So when I was a resident, I very quickly realized all of the things my patients needed to make health work were not available, nor could I fix them. I could write a prescription, but if they didn’t have good insurance, they couldn’t fill it. If they couldn’t afford the copay or the deductible, they couldn’t fill it. If they didn’t have transportation, they couldn’t fill it. And I was so frustrated by this, I actually considered leaving medicine.

I was training in Seattle. I thought about going to work for Microsoft. But luckily I had mentors who were health services researchers and they said, hey, you know, you can actually spend your career trying to fix that stuff. I was like, oh my God, that sounds amazing. Sign me up for that! 

DG: I’m really curious why you cared so much about wanting to fix this problem. Why did you not take the Microsoft path?

AC: Well my dad was a surgeon. And I had been conditioned my whole life to believe that our health care system was so amazing and I had seen, you know, people cured. And then to realize that those were the lucky few that snuck through and somehow managed to navigate the system to get what they needed.

But then confronted by the fact that so many people don’t? That really bothered me in ways that really got all the way down into my soul. But I also felt like we could fix this. 

DG: Was your dad around when you made the decision to get into health services research?

AC: I feel like you’re setting me up here because I tell a joke all the time that. When I told him I wanted to be a pediatrician, he heard garbage man. And when I told him I wanted to be an academic health services researcher, he heard ditch digger. Like he was not happy. I think he just couldn’t comprehend why I would want to do this as opposed to what he considered to be, you know, “real medicine.”

DG: Aaron, according to rough estimates from your group AcademyHealth, we as a nation spent $6 billion in 2023 on health services research. This bridge you’re talking about between discovering something and making it useful in people’s lives. 

About two-thirds of that $6 billion comes from the National Institutes of Health or NIH.

Another big chunk comes from the Agency for Healthcare Research and Quality or AHRQ — an agency very few people have ever heard of, but its whole thing is funding health services research.

What would you say that $6 billion has bought us? For someone who is skeptical, why is this a good use of taxpayer dollars?

AC: Well, it buys evidence that saves lives and money.

I think one great example would be Project Echo. Project Echo started as a pilot program to see, could we hook up rural primary care doctors with specialists in academic centers to improve their ability to treat something complex like hepatitis C. And it worked. 

And AHRQ helped expand it to focus on other things like diabetes and opioid use disorder and even cancer and it allowed rural clinicians to achieve patient outcomes almost as good, if not as good as those seen in, again, these specialty centers or centers of excellence.

We sort of just take, well, of course, that just seems obvious. Why would we not do that? It didn’t exist until AHRQ-funded research to get it started and then help it expand. And that happens all the time.

DG: So that’s a really nice, concrete example of what federal investment in this research buys.

And now AHRQ, the agency that funded Project Echo some 90% of its staff have been laid off or retired early. And the Trump administration wants to end all new AHRQ grants and cut NIH funding by 40%.

Congress, it should be said, has proposed smaller cuts to AHRQ and maintaining NIH funding at current levels.

Aaron, what concerns you most if this funding is cut? What will we lose?

AC: Well, you know, cuts don’t just slow research down. They dismantle capacity. For AHRQ, from what we hear, even if they wanted to get the grants out, there’s like nobody to push the button and do the paperwork and get it going.

If I was coming of age in training at this moment and worrying that maybe this funding would all go away, it might make me less able to go into the field or certainly less willing to do so. And it’s that loss, that sort of pall over the entire research endeavor, that could really slow the pipeline down.

DG: By losing this research, it sounds like you’re saying we’re losing our ability to leverage the power, the potency of what the US health care system is at its best.

AC: Yeah. Health services research is where the rubber meets the road. It’s the stuff that truly affects patients. We all know chronic disease is a real problem. Well, health services research is what does that. We’re all concerned about how much health care costs. Well, if you want to talk about insurance redesign or how to make Medicaid work better that’s all health services research. 

DG: Aaron, we’ve already seen some cuts. It looks like there will likely be more cuts —to what magnitude, sort of TBD. But who picks up the slack? I know I’ve been to several conferences in the last few months where I’ve heard a lot of philanthropy say, don’t look at us. Who replaces federal funding?

AC: Federal funding really is irreplaceable. I mean, if you if you took all the foundations that exist, I think in the United States, if not, you know, the world and added them all together, they would still be infinitesimally small compared to, you know, what we spend on health care and health care spending. Like it’s just not even an order of magnitude the same.

Industry does a fair amount of investment and probably could do more in research, but there’s all kinds of research which doesn’t have any kind of return on investment. I mean, there just isn’t a lot to be made in trying to convince people how to do better prevention or how to reduce health care spending.

DG: You talk about industry coming together. I read an article in STAT that got my attention this summer. A private equity firm announced that it’s stepping in to fund a biomedical research lab at Harvard. Do you worry that we could see big insurance companies, big health systems coming in trying to fund stuff that is self-serving?

AC: Well, don’t get me wrong, I want industry at the table. Industry is essential. You know, partnerships with pharma or with insurers or health systems, they also drive innovation. But they do focus on areas that they care about.

It’s always going to have conflicts of interest. Public dollars ensure independence and credibility. Industry can bring resources and speed, and we need all of it together. If we abandon one pillar, the other pillars can’t do quite the same job.

DG: Aaron says AcademyHealth continues to make the case for health services research. His team lobbies Congress and the administration.

The group was also part of a lawsuit that forced the government to restore websites with data and information on LGBTQ health, vaccine guidance and more. 

DG: When we come back, Aaron explains what he thinks is broken about health policy research and how it could be fixed. 

BREAK

DG: Welcome back. We’re talking with Aaron Carroll, the president and CEO of Academy Health, about what could happen if the Trump administration starts funding a lot less health policy research.

As we talked about earlier, one of the reasons why I wanted to talk to you about all of this, Aaron, is because you’re comfortable calling out what’s wrong with our health care system in a way other health policy researchers, at least publicly, don’t feel as comfortable doing.

So I want to run through a short list of concerns that I’ve heard about. And I want you to tell me if they are a big problem, little problem or not a problem, and then we’ll talk about solutions. You good with that?

AC: I am.

DG: Great. Okay. Let’s start with the one we’ve heard a lot about from the new head of NIH, Jay Bhattacharya, himself a health services researcher. He says we need more studies that try to confirm previous studies, what are known as replication studies. Here’s Bhattacharya in a Senate hearing earlier this year.

Jay Bhattacharya: Many many studies are published and they’re not subject to replication at all. But replication is the heart and soul of what truth is in science.

DG: So, Aaron, is what Bhattacharya describes there – a lack of follow-up research to confirm an interesting finding – a big problem, little problem. Not a problem?

AC: So I’m going to make one distinction in answering this. I think in some areas of science, often in basic science it’s a big problem with health services research. Not as big a problem. Having said that, you still want to raise the bar. You need more transparency, better data standards, open science. You know, all the kinds of things which make it so that you have more faith and trust in the results.

DG: Can you give me an example so I can understand, like what you really mean there?

AC: Yeah, you are more likely to get something published if it has a splashy positive result than if it has a negative result. But knowing what doesn’t work is just as important as what works. And improving the transparency of how research is done, improving what we call open science, the idea that we have to be more transparent about what methods we’re using, what results we might get, would improve the quality of what comes after.

So there are things that we could absolutely do to make all of this better.

DG: Ok, Aaron, next issue is one you and I have talked about before, that health policy research is really good at pointing out problems and much less interested in identifying solutions. Big problem? Little problem? Not a problem?

AC: I think. Huge problem. You can open up any journal and read 100 studies on why the U.S. health care system is terrible. You don’t read nearly as many studies on what we should do about that.

You know, if you keep complaining about the same thing for decades, after a while, people are like, whatever, you know, you’re not helping. That’s a real, real problem. Now, a little of it also lies on the other side. Politicians certainly want to present all policy solutions as having no downside. That almost never happens in health care. Almost never. There’s always a trade off, and we’re not good at acknowledging that. So this I think in general is a big problem and one that we’re very focused on.

DG: Is there one problem that you are tired of hearing about that we’ve not sort of advanced the ball on enough?

AC: It’s not that I’m tired of hearing about it, but I get frustrated that we still continue to churn out enormous numbers of studies that focus on proving that disparities exist in health care. I think I wrote a column not many years ago where I was like, I don’t believe there are any people left who are not yet convinced that there are disparities in health care, who would be convinced by one more study. At some point, we know. Now, what are we going to do about it? 

DG: Aaron, last issue I’d like your take on is the argument that a lot of health care research just isn’t that good. We talked about this with Stuart Buck who runs the nonprofit think tank the Good Science Project and is a proponent of reforming the NIH.

He used a phrase you often hear in these debates: the “small crappy trial” problem.

Stuart Buck (SB): Trials or studies on interventions that don’t seem particularly likely to be all that innovative. And not done the most rigorous way. And so it’s like, what do we even learn from them?

DG: Small, crappy trials, Aaron. Big problem, little problem. Not a problem.

AC: I think it’s a medium sized problem. But if you want to cut money, that’s the trade off. If you want to improve the impact studies, if you want to improve the quality of the trials, if you want to make sure that we’re doing big studies that have major impact, that’s a lot of money. You need to increase the funding. We absolutely can do a better job, but that will require investment.

DG: Is there any upside in your mind to what the administration wants to do here? Are any of these moves that the administration is making going to address some of the shortcomings that you and people actually kind of across the political spectrum as researchers have identified?

AC: Well, I gotta be honest, you know, when I, when I’ve talked to Jay Bhattacharya, I think that a lot of what, you know, he talks about in trying to reform science would probably resonate with a large number of people who are actually doing science. Simplifying grant applications? Absolutely. I think that’s amazing. Trying to focus more on, you know, solutions, not pointing out problems. I think that’s great.

But the problem is massive cuts to the budget are not going to get us better. They will get us cheaper. Eliminating, for ideological reasons, whole areas of research are not going to get us where we need to be.

DG: And what has Jay said to you when you’ve made that point to him?

AC: Well, you know, I don’t know that I should repeat others’ words, but I, you know, would argue that that I would argue that Jay Bhattacharyya’s job is the NIH, and a lot of decisions that have been made are being made by others. A lot of decisions in health and human services are up to the Secretary of Health and Human Services, which is RFK Jr. And so while the president may want to massively cut the NIH budget, it’s our hope that when it actually comes out of Congress, we won’t see a cut. If anything, we’ll see, I mean, I would love to see an increase, but you know, we’ll hope that we just don’t see major cuts.

DG: We reached out to NIH and the Department of Health and Human Services to request an interview on how these cuts would impact health services research.

A spokesperson sent a statement that said, “HHS is committed to restoring the Department to its tradition of upholding gold-standard, evidence-based science. The Department remains committed to research that is free from ideology and bias.”

DG: If President Trump or Health Secretary Kennedy called and asked you, Aaron Carroll, for two big ideas on how to fix health policy research, what two fixes would you offer?

AC: I think we need to massively rebuild trust in science. Evidence only matters if people see it as relevant and trustworthy. That means we need to improve communication. We need to improve engagement. And we really need to do a better job of making people understand again, including policymakers, that everything involves trade offs and that the evidence is not going to provide a perfect solution.

The second is we need to reform how we reward researchers. Not just for publishing papers, not just for getting grants, but for producing findings that clinicians, policymakers and communities can use. That’s how we can make people care. That’s how we can make care safer, more affordable, more effective. And that’s how we can make a better health care system.

DG: What does that look like? What does rewarding that, incentivizing that look like?

AC: Well the NIH, at this point grades research on a variety of different categories. We could change some of those criteria to be real world application. You know, if you’re doing research that actually gets used by the public in some way, you’re more likely to get refunded in the future.

You know, we could prioritize funding projects that produce actionable findings like tools or policy briefs or interventions, not just papers in high impact journals. That’s the coin of the realm. The coin of the realm should be, did you do work that actually made a difference? That improved the way that clinicians practice? That improved the policies that we can make or improve the lives of Americans and communities?

DG: Final question. I’m gonna go back to your dad, the surgeon who was less than thrilled about your career choices. 

AC: Yeah.

DG: When you talk to him towards the end of his life, whether he actually said something to you or not, what’s your sense of what you think he thought you had accomplished?

AC: I knew he was proud of me, but he was better at telling other people than telling me personally. My brother and I used to joke all the time that, you know, as soon as one of us would start talking about something we did, he’d immediately start talking about the other sibling. But I do feel like he came around more and more to the idea that this work was important, and I think he valued that a lot of the research that I did actually had practical applications.

But when I talked about the field in general, his eyes would still glaze over. But I never took that personally because he wasn’t alone. Lots of people still don’t understand health services and health policy research. It is not something I lay at the feet of my father. It’s something I lay at the feet, unfortunately, of health services and health policy research, that we all need to do a better job of explaining and operationalizing the work that we do so that it truly makes a difference and improves people’s lives.

DG: Aaron Carroll, thanks for taking the time to talk to us on Tradeoffs.

AC: Anytime.

DG: I’m Dan Gorenstein, this is Tradeoffs.