The Dose - “Data Silence” Holds High Stakes for People’s Health

Episode Date: May 9, 2025

We’re in a pivotal moment for health care equity and public health. Systems for tracking data on maternal mortality and chronic disease are being dismantled, with consequences that could last generations. On this week’s episode of The Dose, Dr. Marcella Nunez-Smith joins host Joel Bervell to talk about who’s represented in the health data we collect, and who isn’t, and why it’s so important for “people to feel safe in sharing” their data and “to have trust that it’s protected.” Dr. Nunez-Smith also explains how her experience as a parent of a child with a rare disease frames how she approaches her work in health equity.

The Dose is a production of the Commonwealth Fund, a foundation dedicated to healthcare for everyone. My guest on this episode of The Dose is Dr. Marcella Nunez-Smith, Associate Dean for Health Equity Research and Professor of Internal Medicine at the Yale School of Medicine, where she holds multiple appointments and conducts her own research, primarily focused on promoting health and healthcare equity. She's a principal investigator for several NIH-funded research projects and also directs the Hosen Commonwealth

Fund Fellowship in Health Equity Leadership. For all of those reasons, and because her work and example continues to guide many of us early career healthcare professionals, I'm so happy to welcome Dr. Nunez-Smith to join me for this conversation. So Dr. Nunez-Smith, you've said that data collection in the United States reflects our values and the data we have failed us in the COVID crisis. Looking ahead, can you describe a shift in both the methodology and values that would

yield more effective data? Are we getting at the right metrics and measures, and if not, how do we get there? I'm just thrilled to be here, Joelle. I want to tell you thank you for making this platform. And I think starting off by talking about data, it makes a whole lot of sense. And it is something I am obsessed with. I really value data and high quality data and accurate data. And it's something I talked a lot about, you know, at the height of the COVID pandemic and in particularly those data gaps, right, which is a little bit about, you know, where your question takes this is, I think

probably early on, it was a group of advocates and representatives from the disability community. And they showed up and they said, you know, can you talk to us about how COVID-19 is affecting people with disabilities? And that was a real data gap, right? We just didn't have data systems that consistently collected the variables that would help us create a composite that could look at that. And it was a real aha moment for me, that for many people data invisibility is a huge challenge.

And in many ways, it reflects our values. Absolutely. Right? Like what we collect reflects our values. So I do think we're at this watershed moment about thinking through what do we need to collect? Who gets to decide? Right? Who gets to decide what those metrics are and what's important? Who gets to decide where those data are even stored? Who can access them? Like, where are those governance pieces? Who owns the data? And how do we make sure that as we struggle to think about ways to communicate the value of data and the value of data collection, often to communities that are skeptical, that we are also honoring and recognizing

why there are many, many people who are hesitant to share their data, want to know how their data are gonna be used, know that in the past, and even in contemporary examples, right, data can be used for harm. And I would say one of the things that I am always championing

is making sure that we are going in almost in a grassroots movement kind of way, talking to directly to patients and communities about the value of data, but also listening, right? Asking that question, what data are important to you? What do you want us to be held accountable for within our healthcare systems? Mm-hmm. And I think it's important what you just said. And I'm curious, do you see a tension between traditional deciders on the metrics and broadening who gets included in these conversations?

Such a great question. Here I am a proud, card-carrying academic physician researcher, right? And I care a lot about the methods for measurement development. I respect expert opinion and expert consensus. So what I would say is, you know, that table probably could be expanded a bit. And the expertise that's represented could be expanded some to make sure we're capturing that patient and community perspective. I'm never gonna argue.

Look, when you show up in the hospital, you've got pneumonia, how quickly we can get you those antibiotics, that's an important measure. We should be tracking that. We should be paying attention to that. So I'm not even showing up to necessarily vote any existing measures off the island,

but I do think that there is an entire universe available to us to think about, in particular, things like the patient care experience. You know, how are we capturing that? Who best to talk to us about that? But I would say, you know, let's be creative and curious. We can talk to patients and community about other metrics too,

other dimensions of quality and quality of care. And I think often there is, I would say, a presumption. It's not a malicious one, but you know, this question of can someone who's not a trained clinician contribute meaningfully to a conversation around, you know, what does high quality pneumonia care look like or high quality heart attack care look like? And I would posit yes, right, that people can contribute to this conversation. People can help us prioritize, right? In this plethora of quality measures, right?

What is most important to patients? And, you know, where can we create that space for that dialogue? In every case, it makes the science better, it makes our work better. And I'll tell you, Ejioel, this is a great moment to be having this conversation, because I think about data in terms of

really interrogating, what are data anyway, right? How do we begin to classify data? I'm a strong advocate for all of those data systems, and I think we've gotta pay close attention, because many of our large scale data collection initiatives that are run federally are on pause and some have been stopped and the implications for us. But I always, always want to really be a fighter

and a champion for small data too, right? Like how are we looking in a very local way at the opportunities to collect information that can help inform our policies, our practices? Data are really anything that can help you make that evidence-based informed choice around our policies, around our practices. And if you're collecting information that isn't ultimately going to move the needle and improving health outcomes for everybody, then it's not data, right? That's noise.

Absolutely. And you kind of, some of what you were talking about transitions directly to a question I want to ask next, which is the fact that you're at Yale University, a powerhouse research institute, but then also the current climate that we're in. How do you see a rethinking of data gathering at the institutional level, given the current political climate that we're in, where we're wanting to diversify the types of information that we're receiving, yet we're seeing pushback from that, from specific parties? Yeah. No, it's the right question for the moment.

You know, I want to say really clearly that we need those federal data collection systems. I'm working now in the state on an initiative on maternal health. And we've gotten news that the CDC team that collects data on maternal health nationally has been shuttered, perhaps temporarily. I wanna be really clear that I'm not talking about substitutes for the really great work that career folks have been doing for a long time at the national level, the federal level, to aggregate data, to collect data, to standardize data,

to do this in a really predictable cadence that gives us as close to real time as we can. Why do we need that? You get sort of a statistic, and usually you get a top line statistic that might make the evening news, and people want to know. And the reason we need these data is because we have to figure out where resources are most

needed. That is at the bottom line. Where is the need the greatest? Whether you talk about hot spots, or cold spots, or deserts, and so on, the maternal health, that's like one example. And we really have quite a bit of work to do nationally right when you look on the international landscape we fall behind our parent nations on our maternal health outcomes and the real risk here is that

we're gonna backslide and not know and it's gonna be so hard to catch up but your question was about you know where are these opportunities in this moment for this re-imagining and imagining of data and data collection? I'm super privileged right here at Yale to be working with outstanding colleagues who are innovators on thinking about data and data advances, data innovation, and data technologies,

and leveraging that for sure. We talked a little bit about what does that look like when you think about machine learning opportunities and these large big data systems, national language processing. I'm also really lucky to work with outstanding community partners in this region and beyond who have also been thinking of this question.

And again, one place that I would continue to push us to is how can we make sure that we aren't missing opportunities for data collection, data gathering, that aren't traditional, right? But also at the same time, we need those traditional data collection efforts. We need those really robust multi-state across jurisdiction harmonized data tools that give us that dashboard

and that that window into what's happening in the macro. And then on that hyper local level, you know, let's let's let's leave the ivory tower. Let's leave our health care systems like let's pound the pavement and we're going to get data that way too. Yeah. And that makes me think about kind of what's happening once again in the kind of the federal landscape. So the federal government recently has shed tens of thousands of workers in health and human services and medical research science. As you mentioned, many of the teams,

for example, that are working on maternal mortality have been laid off, or at least temporarily put on leave. I'm not sure if it's gonna be coming back. But I wonder how you think these changes at the federal level may have implications for a shifting landscape, for health equity more broadly, and even in communities. Yeah. You know, as a country right now, we are struggling with the infectious disease outbreak of measles. We have constant increasing burden with chronic disease. These are all areas that we need to be tracking and understanding where we are as a nation so that we can intervene and intervene appropriately. We

are fortunate in 2025 to have a robust evidence base across a number of conditions and importantly across preventive care activities, behaviors, screenings, and tests that we can do. So if we can, you know, in column A, collect the data and in column B respond, that's how we get to better collective health for people. And the thing that's the connector there that unifier are gonna be data,

and data that are collected in a standardized rigorous way that are analyzed with expertise that's necessary to analyze those data, those are complex data systems. So I do think that when we look at perhaps a period of data silence, that is a poor prognostic indicator for our country's health. And local data efforts and how do we make sure that data systems can speak to each other really well? How can we streamline data collection? How can we protect data privacy? So I wouldn't

say that we were at done with a federal data system as it were. But this pause, right, and this period of data silence that we might be in, I think it's going to be hard to come back from. And I do worry about generational effects. And I would say on one side, right, this is like the, you know, we're continuing to try to aspire and achieve, if you look at the most basic vital statistics compared to our peer countries.

So life expectancy, infant mortality, maternal mortality, right, we still lag. And this is one of the tools to get us there. This is also how we train and teach the next generation is through the doing, right? We still lag. And this is one of the tools to get us there. This is also how we train and teach the next generation is through the doing, right? This interruption really does threaten the fabric of even having the know-how to do the work. Yeah, I think about my peers right now, who many of them worked at HHS and in different departments and have been posting about how they've been laid off. This is the next generation that was learning about how to critically engage and think about

the data that's out there. And now look, you know, whether it's on pharmaceuticals or devices, therapeutic approaches, the way that we do procedures, you know, to a patient, you can point at how this last generation of fueling and funding scientific curiosity has benefited us. Whether somebody does a survey or not, how does that affect me? Yeah. I'm loving everything that you're saying because I think data starts the conversation, but

then it's the stories that make us listen. And that change happens when we're able to connect both of those things, which is exactly what you're saying. Are there real advances being made in making more Americans more visible in data collection right now? And how is that happening if it is? Or how could it happen if it's not? Yeah, perfect. Great question. So, you know, I will, I'm going to lean into optimism right now, Joelle. I'm going to say that yes, and I am very concerned about public trust. Find ten folks, nine of them are gonna say, I'm not sure that I want people to

know more about me. We need people to feel safe in sharing and to have trust that that's protected, that that won't be used against them. This notion of, well once you make me visible, am I still safe? And we've got to figure that one out as we continue to champion for data visibility. Does we just have to? Yeah.

That's so powerful and something that I think is really important because data just doesn't come from communities. It comes with them. And if people, like you're saying, don't trust the process, they won't share the truth of what they're actually going through. So the question isn't just how do we collect data, but it's have we earned the right to hear those stories in the first place. And I'd argue that unfortunately,

medicine hasn't always. It's that we're trying to kind of rectify that so we actually make sure we get accurate data. And just to paint a picture for listeners, what are the impacts that having more position in data collection could have at the researcher level and at the patient level? Just to ground this in some work that you've done, I know you've been instrumental in the Eastern Caribbean Health Outcomes Research Network as a PI, which is a first of its kind regional research network studying chronic disease. I'm hoping you can tell us a little bit about that and how position can impact data collection for researchers and for patients. Yes. So I am from St. Thomas in the U.S. Virgin Islands, right? I grew up in one of our country's

territories. And so the territories that I'm talking about, it's the Virgin Islands and Puerto Rico, American Samoa, Guam, Northern Marianas, right? And they move as a policy collective. And I mean, there's a strong literature showing gaps for folks over 65. Race ethnicity, talk about sexual gender minorities, religious minorities, folks with fewer economic opportunities, and geography, right? And I say, you know, what has brought me to this work has been geography. And you know, growing up in a small little island, a degree of geographic isolation and distance and what that meant for access to health care and health care services.

And so that begins my why story and along with just a whole network of amazing colleagues and partners have stood up. It's a network, it's a partnership between the University of the West Indies, University of the Virgin Islands, University of Puerto Rico, Yale University, really studying chronic disease in the region. This is a region, we are, you know, this is not where you want to be number one. We are far and away in the Caribbean region facing this pandemic, not a word I use lightly, right, of chronic disease. And at the Center of ECORN we have an intergenerational cohort that we're following over time really looking at these chronic disease outcomes. And so being able to look and

work with people who are ancestral, like ancestral diversity and variation, but people who are facing a unique geographic reality, right? And the learnings that are cross-learnings. So that's the work that we've been doing, very action-oriented, really guided by, you know, the needs. Hurricanes are something that people are familiar with in that region, increasingly so in the mainland. You know, so how do we use this to learn about disasters and chronic disease outcomes, preparedness

for disasters, and making sure we account for chronic disease and management of that in the aftermath? So thinking about these territories, this question of place and health and health outcomes is really at the center of Echorin's work. Thank you so much for the work you're doing there. So, so, so important. And going back to something you said earlier, you said that you're optimistic about more healthcare workers being trained

with a health equity lens. So in other words, being able to take into account how policies or programs create and or bridge disparities in healthcare access and outcomes. Where do you see that happening right now? And where do you actually see that threatened, potentially threatened? So I came into this learning before health equity was a term, and when we were starting

to understand and characterize what disparities are. And I think that in medical education, there has been such tremendous progress in general in thinking about how we teach this next generation of clinicians all that they need to know, which is a lot. All that they need to know, including giving them tools to see patients in their whole. And I think that's happening in a lot of places in the undergraduate medical education. In fact, you know, I teach a class or, you know, recently passed that baton, but on, you know, health equity and population health. And over the arc of it, I'm telling you, having students come in and beginning with awareness raising, right, of the first few lectures, like this is the

state of the, these are our data, right? These are our local data, these are our national data. And now folks come in, and you gotta get to 4.0, right? Awareness is raised, people are coming in, they know, right? So many folks have their own journeys. Once again, this eye opening of all the folks who have been touched, right? All of the folks who are under our big tent where there are opportunities to improve health outcomes.

And I have found that to be just really gratifying, right? To see the learners pushing and learning, so many coming in, you know, in a solution mindset. You know, how do we solve for, right? You know, where is it threatened? I mean, I think this is again, perhaps a collective do we solve for, right? Where is it threatened? I mean, I think this is again, perhaps a collective learning moment for us, right? In the same way that I think we have a moment here

to understand together the importance of data. I think we have a collective learning moment now to understand that when we're talking about health equity, it's really, it's an opportunity agenda, right? This is about being fair, making sure everyone is getting their best health. That's a political concept. And so we really should be able to convey that so that our learners can do their best work. These folks are going to take care of me. Trust I'm invested. I'm like, you're going to take care of me. I want you to see me, all of me, and have an evidence base that will help you guide the treatment.

And I want you to have a curiosity about what my life is, like a genuine interest in my life, and then what my health goals are, what my values are, you know, what I want, how we can aspire. I think what threatens us is perhaps a misunderstanding, right, really, about where that learning is, how it is so critical for folks who how we can aspire. I think what threatens us is perhaps misunderstandings, really, about where that learning is, how it is so critical for folks who are gonna be at a bedside, for folks who are gonna be in a policy setting

to have this grounding, to have this foundation. And it's something we all want. It's something I want. I want to know that my clinician has been trained really well in physiology and anatomy and genetics and everything, but also in making sure I'm going to come out of this the best that I can. And they need all of that knowledge to do that.

Absolutely. Making sure that's holistically looking at a patient, not just as a data point, but as an individual, as a person, understanding those needs. I think that's so powerful. So as we wrap, I want to ask you this last question, and it's kind of a big one, but I'm asking it anyway. Given the chaos and instability that we're seeing in the world right now, and the very real possibility of major setbacks in public health as we've outlined today, what do you see as the most urgent challenges

that we need to be bracing for? And in light of that, what's on your agenda personally, today, this year, but also over the next five years to meet these challenges? Yeah. I take a breath, right? It's a big question. And I'm a parent.

Yeah. So I am really concerned for the inheritance of my children scientifically. I'm a rare disease parent, right, one of my children, very complex medical needs. You know, I'm a person who prays every day for scientific discovery to bring us more options. And I worry for loss. I grieve that. That's what's happening.

I am grieving the loss of these scientific discoveries. I care a lot professionally and personally about making sure that we can connect scientific discoveries with everybody. That's when I'm at socially and I'm talking to folks, like, what is it that you do as a health equity researcher? It's making sure that everyone's benefiting from what we know. And I think that's at risk because of questions around funding and resources paired with real concerns over the ability to imagine scientifically. There are sort of new boundaries that I think a lot of colleagues are trying to guess around.

Like, what can I write? What can I propose? And it stifles creativity and curiosity and imagination, which are the seeds. That's what we need. For my child to get to cure, I need someone to be in their office, in their lab, in their team, dreaming, dreaming all the way and not worried and distracted by is there funding? Is my job

at risk? You know, am I safe? Like all of these questions. You know, I say this to trainees a lot, like we need you. We need you now more than ever. And I need you well. And I need you for the long term. So everyone with their sphere of influence, everyone with what we can control and what we can do. I'm a big proponent of let's make sure

that we're talking across difference and listening across difference, communicating. I own and hold myself accountable to speaking plainly and clearly about why we need this work, why we need data, what's at risk, like let's have these conversations. I also hold myself accountable to listen,

to folks who at first blush, we may be on different views about the importance of science, the importance of research, but also tell everybody, right, while you're doing that, while you're doing what you can from where you are, take care of yourself. Take care of one another.

I think in periods of great uncertainty and fear, there is an opportunity for us to show our humanity to everybody. Express that concern. A thousand acts of kindness. This is how we understand that we are in this together. So reach out and across even if the instinct isn't to do so. Lend that hand, open that door, show care and compassion, and hold to your values. Absolutely.

Dr. Nunez-Smith, thank you so much for joining me on this episode of The Dose. Your clarity, honesty, and your vision is honestly what this moment needs and demands right now. And I feel like at a time where uncertainty sometimes feels like the only constant, your work is a reminder that equity isn't just a goal, but that it's grounded in practice, in better data, deeper trust, and a relentless commitment as you've shown to our community. So truly, thank you again for your leadership

and for continuing to light the way for so many of us like myself. And thank you, be well. This episode of The Dose was produced by Jody Becker, Mickey Kapper, and Naomi Leibowitz. Special thanks to Barry Scholl for editing, Jen Wilson and Rose Wong for art and design, and Paul Frame for web support. Our theme music is Arizona Moon by Blue Dot Sessions. If you want to check us out online, visit thedose.show. There you'll be able to learn more about today's episode and explore other resources. That's it for The Dose. I'm

Joel Brevelle and thank you for listening.