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

JOEL BERVELL: 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 health care equity. She’s a principal investigator for several NIH-funded research projects and also directs the Pozen-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 health care professionals, I’m so happy to welcome Dr. Nunez-Smith to join me for this conversation.

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?

MARCELLA NUNEZ-SMITH: I’m just thrilled to be here, Joel. I want to tell you thank you for making this platform. 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 at the height of the COVID pandemic. And in particularly those data gaps, which is a little bit about where your question takes this is: I think probably early on it was a group of advocates and representatives from the disability community. They showed up and they said, “Can you talk to us about how COVID-19 is affecting people with disabilities?” That was a real data gap. We just didn’t have data systems that consistently collected the variables that would help us create a composite that could look at that. 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. What we collect reflects our values.

I do think we’re at this watershed moment about thinking through: What do we need to collect? Who gets to decide? 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? Where are those governance pieces? Who owns the data? 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 going to be used, know that in the past and even in contemporary examples, data can be used for harm? I would say one of the things that I am always championing is making sure that we are going almost in a grassroots movement kind of way, talking directly to patients and communities about the value of data, but also listening. Asking that question: What data are important to you? What do you want us to be held accountable for within our health care systems?

JOEL BERVELL: I think it’s so important in 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?

MARCELLA NUNEZ-SMITH: It’s such a great question. Here I am a proud card-carrying academic physician researcher. I care a lot about the methods for measurement development. I respect expert opinion and expert consensus. What I would say is 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 going to 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. 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.

How are we capturing that? Who best to talk to us about that? But I would say 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. I think often there is, I would say, a presumption. It’s not a malicious one, but this question of can someone who’s not a trained clinician contribute meaningfully to a conversation around what does high-quality pneumonia care look like, or high-quality heart attack care look like? I would posit yes, that people can contribute to this conversation. People can help us prioritize. In this plethora of quality measures, what is most important to patients and where can we create that space for that dialogue? In every case, it makes the science better, it makes our work better.

I’ll tell you what, Joel, this is a great moment to be having this conversation because I think about data in terms of really interrogating what are data anyway? How do we begin to classify data? I’m a strong advocate for all of those data systems, and I think we’ve got to 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. 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. 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. That’s noise.

JOEL BERVELL: Absolutely. 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 specific parties?

MARCELLA NUNEZ-SMITH: Yeah. No. It’s the right question for the moment. 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, it has been shuttered, perhaps temporarily. Want to 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 a statistic and usually you get a topline statistic that might make the evening news and people want to know.

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. Maternal health, that’s one example. We really have quite a bit of work to do nationally. When you look on the international landscape, we fall behind our peer nations on our maternal health outcomes. The real risk here is that we’re going to backslide and not know, and it’s going to be so hard to catch up. But your question was about where are these opportunities in this moment for this reimagining 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, natural 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. 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? But also at the same time we need those traditional data collection efforts. We need those really robust multistate, across jurisdiction, harmonized data tools that give us that dashboard and that window into what’s happening on the macro. Then on that hyper-local level, let’s leave the ivory tower, let’s leave our health care systems, let’s pound the pavement. We’re going to get data that way too.

JOEL BERVELL: Yeah. That makes me think about what’s happening, once again, in the federal landscape. 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 going to 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?

MARCELLA NUNEZ-SMITH: Yeah. As a country right now, we are struggling with a 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. If we can in column A collect the data and in column B respond, that’s how we get to better collective health for people. The thing that’s the connector there, that unifier are going to 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. 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.

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? I wouldn’t say that we were at done with a federal data system, as it were. But this pause, and this period of data silence that we might be in, I think it’s going to be hard to come back from. I do worry about generational effects. I would say on one side, this is like 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 — we still lag. 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.

JOEL BERVELL: 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.

MARCELLA NUNEZ-SMITH: Now look, whether it’s in pharmaceuticals or devices, therapeutic approaches, the way that we do procedures, 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?

JOEL BERVELL: 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. 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? How is that happening, if it is, or how could it happen if it’s not?

MARCELLA NUNEZ-SMITH: Yeah. Perfect. Great question. I’m going to lean into optimism right now, Joel. I’m going to say that yes, I am very concerned about public trust. Find 10 folks, nine of them are going to 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? We’ve got to figure that one out as we continue to champion for data visibility. We just have to.

JOEL BERVELL: 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. If people, like you’re saying, don’t trust the process, they won’t share the truth of what they’re actually going through. 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? I’d argue that unfortunately medicine hasn’t always, and so we’re trying to rectify that so we actually make sure we get accurate data.

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 [ECHORN] as a P.I., 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?

MARCELLA NUNEZ-SMITH: Yes. I am from St. Thomas in the U.S. Virgin Islands. I grew up in one of our country’s territories. The territories that I am talking about — it’s the Virgin Islands and Puerto Rico, American Samoa, Guam, Northern Marianas — and they move as a policy collective. That means 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. I say what has brought me to this work has been geography and 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. 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 . . . 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 — of chronic disease. At the center of ECHORN we have an intergenerational cohort that we’re following over time, really looking at these chronic disease outcomes. 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, and the learnings that are cross-learnings.

That’s the work that we’ve been doing. Very action-oriented, really guided by the needs. Hurricanes are something that people are familiar with in that region, increasingly so in the mainland. 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? Thinking about these territories, this question of place and health and health outcomes is really at the center of ECHORN’s work.

JOEL BERVELL: Thank you so much for the work you’re doing there, so, so, so important. Going back to something you said earlier, you said that you’re optimistic about more health care workers being trained with a health equity lens. In other words, being able to take into account how policies or programs create and/or bridge disparities in health care access and outcomes. Where do you see that happening right now, and where do you actually see that threatened, potentially threatened?

MARCELLA NUNEZ-SMITH: I came into this learning before health equity was a term, and when we were starting to understand and characterize what disparities are. 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. I think that’s happening in a lot of places in the undergraduate medical education. In fact, I teach a class or recently passed that baton, but on health equity and population health. Over the arc of it, I’m telling you, having students come in and beginning with awareness-raising of the first few lectures, like, “This is the state of . . . these are our data. These are our local data. These are our national data.” Now folks come in and you got to get to 4.0. Awareness is raised. People are coming in. They know. So many folks have their own journeys.

Once again, this eye-opening of all the folks who have been touched, all of the folks who are under our big tent where there are opportunities to improve health outcomes. I have found that to be just really gratifying to see the learners pushing and learning. So many coming in a solution mindset. How do we solve for? Where is it threatened? I think this is, again, perhaps a collective learning moment for us, 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 an opportunity agenda. This is about being fair, making sure everyone is getting their best health. That’s an apolitical concept. 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. I want you to have a curiosity about what my life is. A genuine interest in my life, and then what my health goals are, what my values are, what I want, 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 going to be at a bedside, for folks who are going to be in a policy setting to have this grounding, to have this foundation. 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.

JOEL BERVELL: Absolutely. Making sure that’s holistically looking at a patient.

MARCELLA NUNEZ-SMITH: Yes.

JOEL BERVELL: Not just as a data point, but as an individual, as a person, and understanding those needs. I think that’s so powerful. As we wrap, I want to ask you this last question, and it’s a big one, but I’m going to ask 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? In light of that, what’s on your agenda personally today, this year, but also over the next five years to meet these challenges?

MARCELLA NUNEZ-SMITH: Yeah. I take a breath. It’s a big question. I’m a parent, so I am really concerned for the inheritance of my children scientifically. I’m a rare disease parent. One of my children, very complex medical needs. 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’m 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. 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 new boundaries that I think a lot of colleagues are trying to guess around, like, “What can I write? What can I propose?” 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? Am I safe? All of these questions. I say this to trainees a lot, like, “We need you. We need you now more than ever. I need you well, and I need you for the long term.” 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.

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 I also tell everybody, “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.

JOEL BERVELL: 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. 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. Truly, thank you again for your leadership and for continuing to light the way for so many of us, like myself.

MARCELLA NUNEZ-SMITH: Thank you. Be well.

JOEL BERVELL: This episode of The Dose was produced by Jody Becker, Mickey Capper, 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 Bervell, and thank you for listening.