In this episode of Fellow Fellow, Mark talks to Flavia Chen, a public health researcher, on the current state and future paths of public health data. The conversation weaves through topics surrounding public health data and, as Flavia puts it, “what health related information is collected, who collects it, on whom, how it's used, how it's shared, how it's stored - and then at a more ethical level, how individual and collective rights, like privacy, are balanced with broader public interests.”
Guest:
Flavia Chen is a public health researcher and fellow fellow of mine at the TAPP Project. Prior to the fellowship, she was the Deputy Program Manager for the Program in Prenatal and Pediatric Genome Sequencing at University of California San Francisco. Her research interests focus on the ethical and policy implications of translational genomics, including issues of data governance, as well as on social and policy influences on health outcomes. Flavia’s work has been published in The Hastings Center Report, Genetics in Medicine, and Pediatrics among others. She earned her MPH from the University of Washington. You can follow Flavia’s work on her LinkedIn profile.
Credits:
Produced by Mark Lerner
Music by Zach Pfeifer
Artwork by Zihao Wang
Mark Lerner 0:03
Welcome to Fellow Fellow, a new podcast from Harvard Kennedy School's Technology and Public Purpose project. I'm your host, Mark Lerner, and I'm a fellow at the TAPP project. In this podcast, I interview my fellow fellows about their research and perspectives on some of the most interesting challenges at the intersection of technology and society.
Welcome to another episode of Fellow Fellow. Happy to have my fellow fellow and good friend Flavio Chen joining me today. Flavia is a fellow at the Technology and Public Purpose project. She's also a public health researcher and prior to this fellowship, she was the Deputy Program Manager for the program in Prenatal and Pediatric genome sequencing at the University of California in San Francisco. Her research interests focus on the ethical and policy implications of translational genomics, including issues of data governance, as well as on social and policy influences on health outcomes. Flavia's work has been published in the Hastings Center report, genetics in medicine, and pediatrics, among others, and she earned her MPH from the University of Washington. Flavia, it's good to have you here with me today.
Flavia Chen 1:26
Thanks so much, Mark. I'm happy to be here.
Mark Lerner 1:28
Yeah. So I know that your project is largely on the evolving landscape of public health data. But could you maybe kick us off with a bit of an introduction to your project?
Flavia Chen 1:40
Yeah, I'd be happy to. So my project grew out of an observation that as, as the pandemic evolve, so we were given our fellowships last - what was it, like February, or March, right at the beginning of the pandemic. So as I was sitting at my home in San Francisco at the time, and watching this pandemic evolve, I saw that our ability as a American public to respond seem limited not only by politics and policies, but also by the technological infrastructures and systems underlying our public health system. And I think one word we could pretty much all agree on using to summarize the pandemic responses has been fragmented or had been fragmented. And so those two threads, the social and the technical, the science and society, those are two threads that I've sort of been following in my research. And the thinking of TAPP that Secretary Carter sort of encourages, right, is that there's nothing inevitable about this. So my, my project has been both historical looking to understand how we came to face the pandemic in such a fragmented state, and also forward looking about where should public health go from here.
Mark Lerner 2:49
Mm hmm. And how did you professionally get to the point of wanting to research this sort of thing? What's your history? And how did you get here?
Flavia Chen 2:58
Yeah, so that's a really interesting, meandering story. But first, I'll say, you know, you in the intro, you said that I'm a public health researcher, and this fellowship, the TAPP fellowship has given me an opportunity of, for self reflection in my professional capacity that I don't think I've ever had previously. And the idea that I've been given an opportunity to try and study our public health system from within, but sort of with the eye from the outside, so it's kind of like a fish looking at water for the first time. And that's how, you know, I've come to use the lens of data and infrastructure, modernization, data governance, these things to sort of explore how these systems came to be. And then our role in them, or my role in them. And my, my training and research was in public health genetics. And I definitely think that that training informs my work as a TAPP fellow. In undergrad, I studied environmental studies and history. And that, those two things combined sort of led me into environmental policy. I was really interested in the management of common pool resources, the work of Elinor Ostrom, those folks, and many of those same threads crossover or are really applicable to the governance of genetic data or personal health data more broadly. And, you know, across my a sort of professional career, in public health genetics, I've like come to appreciate the importance of data governance, and there's several sort of recurring policy themes that keep coming out, like, you know, balancing privacy and the benefit that can come from using data in aggregate. You know, sort of the principles of bioethics, like the importance of participant consent and autonomy, and balancing that with sort of the community interests, what is, you know, community standards for data quality, metadata. So that's, yeah, that's how I sort of they all sort of come together under this umbrella of data governance.
Mark Lerner 4:50
I see. And for the uninitiated, including myself, I - honestly before I started, you know, speaking more regularly with you about your project, I didn't know much about the differences between public health data, private health data or general health data. Could you maybe help define what is public health data? And what are you counting within, you know, the sphere of public health data? And maybe how has that changed over time?
Flavia Chen 5:17
Oh, that's wonderful. I actually remember one of our first conversations, it might have been even on the first day of our fellowship, you asked me what I meant by public health data. And I don't know whether you consider yourself a social scientist or qualitative researcher, but I think that's a phenomenal question. And one that we should sort of grapple with more as a society. So, you know, I don't think that data really exist in some natural state, but that we give structure and meaning to data through how we design our institutions, our systems, you know, how we use the data, who we give permission to to use our data, data access, use and rights, that kind of thing. So that's what I mean when I say data governance, right? What, what I mean by public health data, that's also sort of one of those, I can give you a squishy answer. I'm not going to give you a comprehensive answer.
Mark Lerner 6:05
Sure.
Flavia Chen 6:07
But in very broad strokes, data for public health can come from many, many different sources. You have like formal public health surveillance systems that are run by the CDC and public health authorities. You can have surveys, like health data surveys, like the Behavioral Risk Factor Surveillance System surveys, that try and capture sort of a snapshot of a particular health status in a part- in a particular population. But you can also use clinical data to inform public health and you can have like automated case reporting from clinical systems, to public health agencies, public health data can include registries like cancer registries, and biobanks. Also, there's like public sector data like the census that is very informative. And I guess it depends on what you're, what you're counting under the umbrella of public health, but it can be very, very broad. And on top of that, the last two things I would add, that are sort of challenging the our conceptions of what public health data entail is this blurring between research, clinical care, the private sector, and increasingly data coming from individuals themselves. So you can think about the pandemic, using cell phone data to augment public health contact tracing endeavors. So all of a sudden, now, you know, your Fitbit might be public health data, your, you know, your accelerometer, your step counts, things like that. So-
Mark Lerner 7:32
Right.
Flavia Chen 7:33
So I think that that's what I'm- one of the things I'm trying to do for myself with this project is just sort of problematize. Like, is there one thing that counts? Is it a vertical? Is it you know, that you can separate health data from public health data from commercial data, you know, research data? And I'm increasingly feeling like those are not so useful distinctions, but a lot of our laws and regulations sort of try and force data into particular vertical categories.
Mark Lerner 8:02
Now, you mentioned a large part of this, and certainly seems like a massive part of this, from my perspective, is the governance of it all. Who gets to access your data, who gets to use it, who gets to store it, and how they might store it, those sorts of things. And I know that we as a fellowship cohort, we've talked a lot about data and privacy, data and identifyability. And I had a long conversation actually, with another fellow of ours, Rebecca, about the value of data with regards to privacy coming from the ability to re-identify people from it. And I guess I'm interested in your thoughts, as you've been going through your research on how do people balance their self interest - in particular privacy, but there's many others as well - with this desire for a common good and the desire to create a larger public health ecosystem?
Flavia Chen 8:59
Hmm. Yeah, that is, that is really challenging. I definitely see overlaps in Rebecca's research with mine in that in that vein. So you're saying how do I bal- How do you balance the individual interests with the community interest? Yeah, I mean, I think that the way I like to look at it is that each sort of data provider, each data source, each data user comes to the table with different interests, expectations and priorities. And the harms or violations against those expectations can potentially be redressed in different ways, right? Some might be institutional, might be the sort of forms of governance that you set up about who needs to be at a table while decisions are being made. You can have sort of the regression of harms through technical means, right? People are increasingly saying like, you know, we've come up with privacy preserving technologies, and so we can take this particular risk off the table. You know, and we also have sort of legal structures to sort of put, you know, guiding parameters on how, how data can be used, what's permissible.
Mark Lerner 10:06
Right.
Flavia Chen 10:07
I think that none of those things in isolation is, is perfect or sufficient. So one of the, one aspect of my project has been about trying to categorize different stakeholders at this table around, you know, public health data, and identify potential or mismatched expectations, right. So what- I think I mentioned earlier, the rules that govern the clinical research ecosystem might have different expectations or values ascribed to the data that are collected under that sort of umbrella, as opposed to data that are collected in the healthcare setting, right. And I think that all of us both as data providers, as well as as data users are coming to see like, a lot of our systems are sort of blurring.
Mark Lerner 10:47
Right.
Flavia Chen 10:48
And that's when you really want to be attentive to the different power dynamics to say like, you know, how are we solving these sort of, these challenges, these tensions? And I think a lot of it for me, I come back to sort of representation. Like, I love the tools of deliberative community engagement to say, you know, this is a, an issue that we want to, we want to address collectively. We want to say like, you know, there's a benefit to aggregating our data for the public good, it may come with certain trade offs. I personally don't believe in anything of like, you know, forever, non identifiability. I think that that's, that ship has sailed. And so then it's most important to have conversations about, you know, whose data are used for what purposes? And, you know, what are the avenues for redress in case of harm?
Mark Lerner 11:33
I see. Now, you mentioned that part of your work has been to take a look at the different stakeholders in this space and categorize them. Can you speak a little bit to who are these different stakeholders? And maybe, what are the power dynamics between them?
Flavia Chen 11:51
Yeah, well, so I would say that, you know, any, any accounting is going to be incomplete. But you know, and as we said earlier, right, anything can count as public health to, basically.
Mark Lerner 12:02
Right.
Flavia Chen 12:03
So it's, it's most important, I think, in any human interaction, to look at the players and the power dynamics. So as an example, you know, a big source of what data we wish we would have had at the pandemic comes from health systems, right? So, data about COVID status coming or, you know, death records, that kind of thing, coming from the clinical care environment to public health. And there, the incentives for data modernization in the clinical care sector has looked somewhat different, or even substantially different than the incentives for data modernization in governmental public health. And so I think already at the start of the pandemic, we sort of came to the table with different levels of preparation, and people have expressed surprise, you know, this whole idea of, we're still using faxes to get data from clinical care to the public health system.
Mark Lerner 12:53
Right.
Flavia Chen 12:54
But I would say, you know, we're also still using fax machines within the clinical care system. So those are two, I mean, yeah, very much aggregated, right? The clinical sphere, the governmental public health sphere. And then you might break it down, the patient who interacts with their clinical, clinical care system, what are their expectations about how their data are being used? You might say, you know, I have a relationship with my, my clinician, I know that they're, you know, sitting there furiously typing into the EMR in front of me, but where does that data go from the EMR? You know, throughout the US's recent history, we've, we've tried to incentivize the digitization of, of Clinical Health Records through the HITECH Act and things like that. But that's an incomplete project. And so I guess I'm not surprised when we came to the pandemic, and we couldn't actually seamlessly get data from the clinical care sector to the to the public health sector.
Mark Lerner 13:49
Right. And you mentioned early on in our conversation just now about how a big piece of the, of the pandemic response failure in a way it has been the fragmented aspect of the response. I would love to hear - Do you feel like that comes specifically from the technology aspect about how these systems are disconnected? How data is inaccessible? It seems like it relates just based on what you've been saying so far.
Flavia Chen 14:19
Right. So the fragmentation is, you know, at the, at it's heart, constitutional, right? At the federal level, we say public health is a responsibility of the states. And the states take that very seriously. You know, each state, each territory has its own laws governing the, sort of, the scope of practice for public health as well as for you know, you can have state specific data sharing laws. So that fragmentation, I don't think is directly related to the technical system, but it is definitely made more challenging with the technical system. So I think one, one aspect of fragmentation that we saw was, you know, health officials at various state level felt unsure, you know. Do, does, does HIPAA preclude us, preclude us from sharing this data in a identified format to the federal government? And meanwhile, the federal government, you know, the CDC and Health and Human Services, were saying, no, we want this data to come directly from your, from your hospitals to, to the federal level. So you have this almost like turf wars, right, that you're trying to say, you know, do you have access? Should you have access to this data? For what purposes? And at the same time, we don't have the technical infrastructure. You can't just flip on a switch and say, you know, all COVID tests that are conducted by Harvard University, I want you to send that to, to HHS protect, right? Like, actually, you know, this being a, being an engineer, you have to build the systems in order to handle the data.
Mark Lerner 15:48
Right.
Flavia Chen 15:49
On top of that, we didn't have a standard for, you know, what constitutes a COVID case at the beginning, because COVID-19 had never been seen before. So an interesting, you know, patchwork that arose was we saw public health agencies trying to repurpose existing governmental public health surveillance systems to use for the pandemic. And this kind of, you know, the, this gets at the looking backwards part of my research project, which is, you know, it's not like the pandemic took us all by surprise, to the point where we had no systems in place. We've been trying to come up with a coherent public health data infrastructure for, I would argue, pretty much 50 years. And so, you know, we had, we have the flu surveillance system. And I think, early on before it became a global pandemic, the CDC was asking the states that had pilot projects for flu surveillance to try and repurpose those tools for, for COVID. But not every state had it. I think they were only six that had that particular pilot project running. And so we were all trying to repurpose existing tools. So yeah, I think the fragmentation it has technical manifestations, but its root is much deeper.
Mark Lerner 17:05
Gotcha. Wow. Flavia, there's so many more questions that I want to get into. But before we do any of that, I want to give us a quick break. So we'll be back in just a second to dive more into these topics.
If you want to follow along with Flavia's work, you can find her on LinkedIn and on the Belfer Center's website. Links to both are the podcast show notes.
And we're back to the second part of my conversation with my fellow fellow, Flavia Chen. We've just been talking about the public health ecosystem, in particular, public health data and governance. And we left just as we started to touch on the topic of the COVID 19 pandemic. And I wanted to dive into that a little bit more with you Flavia. In particular, you know, maybe one place to start will just be if you could share your perspectives and your research on how the pandemic and the global nature of the pandemic has changed public health data and public health as a as an ecosystem right now.
Flavia Chen 18:50
At the highest level, I think there's some really positive changes that are coming for public health as a result of the pandemic. We see how central public health data systems are to preserving and protecting the health of populations. And I think we've seen, at least in the US, the sort of catastrophic consequences of not investing in public health infrastructure. So the new Biden administration has already turned the spotlight on to public health data modernization, in a, I think, really productive way. I would also say, though, that the efforts to modernize the data infrastructures predate the pandemic. I think I mentioned in the first half that in my in my view that efforts go back 50 years. But more concretely, you know, to at least 2001. After the 9/11 attacks, there's been a real focus on modernizing the public health data infrastructures. So I think in that sense, there's, there hopefully will be positive changes that come out of it, if we can sustain the investment and sustain the enthusiasm for attending to the public's health. On the flip side, I think, because we're investing in public health in a way that we haven't, in sort of recent memory, there's also the risk that the people who get the funding at this stage are the people who have sort of clawed a seat for themselves at the table.
Mark Lerner 20:18
Right.
Flavia Chen 20:19
Without actually having a deliberation about what we want that public health data infrastructure to accomplish. So that's sort of the domestic. At the international level, I think there are really good signs of international cooperation, or we wouldn't have come to a vaccine as quickly as we did. If it weren't for the clinicians and scientists in China, who very, very, very quickly shared the first sequence of the Coronavirus back in winter of last year. All of this can be framed in a very positive light that it's, we're more aware of the importance of data sharing now. But actually hammering out what that requires and whose participation is needed is going to be a much larger project.
Mark Lerner 21:00
Mm hmm. And how might you say that it's also changed from the perspective of the public themselves? Right? You mentioned larger investments, more attention being given by governments around the world. But what about from the public?
Flavia Chen 21:16
I love that question. I guess, you know, from my non public health eye, the way that I've seen public health data really come into the public's attention has been through COVID dashboards and the work of the COVID Tracking Project to try and make the impact of the pandemic really digestible at an individual level to the, to the populace. And that's, that's been an interesting sort of sociological phenomenon. And that in itself, I don't think we've ever previously had a pandemic documented dashboard by dashboard.
Mark Lerner 21:47
Right.
Flavia Chen 21:48
And then it also sort of gets to the, you know, the need for cross sector collaboration, because those dashboards are not the product of public health, governmental public health agencies alone. There is, you know, overlaps a lot, I think, with your, with your project about tech talent. I would venture, I have not done a full survey, I have to say, of the of the dashboards, but I would venture that it is not actually the public health sector itself that was driving that they may have provided the data and tried to help communicate what was coming out of the data. But that had to be built by by engineers who probably came from the public sector. There's like, you know, tableau, and Microsoft and ESRI, and these kinds of things. But the visualization of the pandemic is something phenomenal. And it really is novel, I think in, in public health data.
Mark Lerner 22:38
Yeah, there are quite a number of different sort of citizen scientist activities that were sprouting up because of the pandemic. And a lot of them, you know, were things that we just didn't see with regards to other public health risks, right? It wasn't until COVID hit all these different people that we started seeing them investing their own time and support.
Flavia Chen 23:00
Absolutely. And one thing I would add is, you know, what data actually gets presented on these dashboards is itself a really interesting sort of political phenomenon. Some dashboards across the country have only case reports. It says, you know, among this population, these are how many who have gotten sick, these are how we've gotten better. But we also see a lot of regional variability and you know, including social services, like how does a member of this population get access to assistance delivering medications, for instance, if they have to quarantine? So I think it's also really interesting what, what data are presented? It's not, there's no data is inherently meaningful. It's what, it's what the institution is putting, who's putting the dashboard together decides to present.
Mark Lerner 23:44
Right. Now, do you view that large scale effort of a bunch of different fragmented people trying to pull together these dashboards as sort of what we can expect to see from the future of public health? Or is this a one off thing that happened because of the global nature of this pandemic?
Flavia Chen 24:01
Hmm. I don't see dashboards going away. I think that it's our - it's a really interesting question. You could probably like write a PhD dissertation about, like, what are we trying to accomplish with data dashboards. I think they have a purpose. I don't think that they are, they fulfill all the purposes that you would want governmental public health to accomplish. And there's, you know, in the same way, there was a, you know, interesting sort of conversation going back and forth between the Atlantic's COVID Tracking Project and governmental public health, you know, the CDC, right. And the COVID Tracking Project basically said, we started this service because it was something that we expected the federal government to provide but wasn't being provided.
Mark Lerner 24:46
Right.
Flavia Chen 24:47
And they kept going because they didn't see it changing until you know, much, maybe almost a year into the pandemic. And now, the CDC and the states are sort of able to carry that for themselves. I think at the sort of underlying level, there's an element of transparency and, you know, having a foundation on which decisions are being made. This gets at the sort of potential for the politicization of the pandemic. And I think this ties in really, in a fascinating way, with a lot of other research going on at the Kennedy School about sort of missing disinformation, and the the ability of platforms to communicate data to a wide audience. So, I don't think it's going away. I think that if anything, governmental public health agencies will become more savvy in quickly disseminating, digesting data to present to decision makers as well as the public. But I also have to say like, I don't think that this is entirely novel. I'm sure that this is all going on behind the scenes, but the public aspect of it, I think it's something that, that will continue. Just as you know, we'll have to have conversations about, you know, what does a good dashboard look like? You know, were there - In a way this pandemic has been, like learning data science in real time. I don't think that any epidemiologists, any public health practitioner would have imagined that the general public would have such a large jump in their vocabulary and their public health vocabulary, if not for a pandemic,
Mark Lerner 26:23
Right. Everyone's now Coronavirus, expert basically.
Flavia Chen 26:25
Yes, yes.
Mark Lerner 26:27
It is fascinating and how it intersects with the work that I've been doing, in that this sort of crisis, a pandemic, shifted a lot of technical talent away from the private sector use cases and private sector jobs and operations that they were running, and moved a lot of these people into the COVID Tracking Project, into a lot of these other efforts. In much a similar way that another public health crisis, the healthcare.gov issue, you know, moved a bunch of technical talent as well from the private sector into the public sector, and has continued to do so. A large part of what I'm working on is trying to make the case that we need more of this sort of technical talent to come over. And we've under invested significantly in technical talent as part of public services, government services. Does that, does that seem like it's a it's a fair parallel to say, with the public health sector as a specific sector to call out here?
Flavia Chen 27:29
I think that there are definitely parallels. You know, I mentioned the tremendous under investment and governmental public health. And not only that, over the course of the pandemic we've seen, I would almost call it a mass exodus of state and local public health leaders, because of, you know, burnout on the one hand, politicization, and just bordering on abuse, I think some, you know, there are cases that it's sort of, threats of violence.
Mark Lerner 27:57
Right.
Flavia Chen 27:58
And we also have, public health has an ageing workforce, that has to do with the underinvestment. The salaries, just as in the public, public sector, writ large, I think don't track with what the private sector has to offer. And there are definitely a sort of paucity of those technical skills across the country. That being said, I think that people go into public health very much for the right reasons. And I wouldn't want to say that we want to bring any fewer of those people into, into governmental public health. I think that by and large, there will there will have to be a step up in data literacy and how we communicate about uncertainty with the public. But I also see there's a lot of enthusiasm. I think that public health is one of the few academic sectors right now that's sort of getting a real big boost from the pandemic. Everyone wants to- I think they call it the Fauci effect, everyone wants to be an epidemiologist now.
Mark Lerner 28:57
Right.
Flavia Chen 28:58
So I think that if we could, if we could address the low pay issue, we could attract people who are really enthusiastic about data visualization, and data communication, you know, coding. So this is an interesting story, right? That where Google and Apple are really enthusiastic about partnering with state and local public health agencies and designing the contactless test and trace app, or whatever it was called. But there was a, there was a mismatch that Google seemed to assume that if they just created a back end, that the, the public health agencies could, you know, make their own apps that they could then push out.
Mark Lerner 29:41
Right.
Flavia Chen 29:42
Unfortunately, they had a lot of other things on their agendas and designing a really, you know, user friendly app was probably not very high on the on the docket, if they did have the talent at all. So I commend the private sector for sort of being very helpful. They're trying to be helpful. I think that that's the, that's the nature of the issue for me across these things. So I think that there was a lot of goodwill, but aligning that with the right resources in order to actually make things happen and having opportunities for reflection and deliberation, saying, you know, maybe this technical solution won't pan out, or maybe this isn't the biggest priority right now. How else can we help? I think that there's there's an opportunity for that there, too. But definitely, yeah, I think that there's some overlap with your project.
Mark Lerner 30:28
Yeah. And, you know, under investment seems like it's, it's a lesson that all of us have started seeing as part of what we've learned during the COVID pandemic. But what might be some of the other lessons that we've had to learn the hard way?
Flavia Chen 30:46
Well, I think the biggest one for me is thinking about what is a public good. And, you know, are there elements of the public sector use of data, private sector use of data, that are irreconcilable? Or is that just we haven't had the opportunity to talk about, you know, who benefits in these different contexts? I personally think of public health as, as being a public good. But it can also, that, I think that underinvestment shows that we can't just rely on - or I wouldn't want to ask the private sector to provide the services that the public sector can provide.
Mark Lerner 31:20
Right.
Flavia Chen 31:20
But I hope that we don't just go back after the end of the pandemic, to business as usual, because that really wasn't working for a lot of people.
Mark Lerner 31:28
Right, right. Yeah, absolutely. Now, you had mentioned earlier, something that I wanted to actually come back to, which was this aspect of transparency and trust. And it seems like that's actually something that we've had a lot of issues with, especially early on in our COVID-19 response efforts. And I'm curious if through your research, either looking historically, or at what people are thinking about in the future, if you have any thoughts on that, how do we do that right? How do we do that data governance data management piece right? Specifically with regards to building trust and being transparent?
Flavia Chen 32:06
Well, I think my first take on that would be, having looked back at the history of how we got here, is that this is, these are not the kinds of systems that you want to be trying to build during a pandemic. And I've had several people say to me that, yes, sure, data governance is important. But really, we would have had a very different pandemic if we had different leadership. I think that that's, there's an element of truth to that. And I don't really have a solution for the public communication aspect. Because, you know, I don't- I think I've said this three times, I don't think that data sort of speak for themselves. So you can have the best data infrastructure in the world. And you can have someone with nefarious intent, just very actively undermining, sort of, truthful communication. I think the concept of transparency can also be sort of misused. This gets it, Onora O'neill, right? One of my, one of my favorite philosophers who talks about trust and trustworthiness, and she says, you know, transparency isn't really a cure for anything or everything, if you don't have a trustworthy institution.
Mark Lerner 33:18
Interesting.
Flavia Chen 33:18
So, I'm a little bit, I'm a little bit skeptical about transparency, just as a goal in itself. I really think it's a conversation about the social contract. What do we owe each other? What do we want public health to provide? I think there has been a very interesting reckoning sort of boiling in the country. Why are people who might otherwise have been so averse to public assistance, so accepting now of what we've done for the country? And I think that has to do with this recognization, that we are actually more alike than we're unalike. This is like really sort of the heart of public health, is like, what are we doing for each other? Sometimes it's a trade off that my personal benefit, I have to put on hold in order to benefit the common good.
Mark Lerner 34:06
So given that we are, well, in some regards, moving towards the latter portion of this COVID-19 pandemic. And, you know, public health is very much so at the front of a lot of people's minds. Who should we look to who's at the forefront of this conversation of public health ethics and data governance right now?
Flavia Chen 34:30
So who's doing this well? I guess in my project, I've tried to put into conversation, people who are working on this issue of data governance across sectors, not just strictly in public health, but really drawing on the lessons from fields that have been grappling with what does it mean to sort of share data in a trustworthy and just way, such as I think the genomics community has been. So you know, one organization that I've been enthusiastic about is Sage Bionetworks, They've been, they've been recognizing, I think for some time that governance, data governance is not a one size fits all solution. And so they've been mapping out what different governance structures, plural, might look like. And then sort of trying to make it into a more modular, you know, use this in different, in different contexts that tie into the sort of purpose of the intended collaboration. So one thing I think that I would highlight here is, you know, these are one to, they're both one to one relationships - Like, Flavia is going to share her data with Mark. But it's also one to many, right? It's across different contexts, as you know, bridging clinical care and research, it's personal data within this wider ecosystem. So I like that they've been trying to explicitly call out that there is not a one size fits all solution. I've really been also enthused by how many data collaborative projects have popped up over the course of the pandemic, some of them are focused on research, some of them are focused more explicitly on data sharing. I've really appreciated how they span academia, industry, government, personal, personal data. Trying to sort of map out or imagine a new way. And rather than sort of continuing in our very siloed, you know, I do my way because I'm in the research environment, it's this realization that data can be potentially useful across environments, and we need to have these conversations to sort of move the ball forward. I think, in terms of a regulatory agency, you know, the FDA has sort of struggled over the course of the pandemic, but also, you know, in the, probably the last decade or so, similar story about underinvestment, and maybe they're being tasked with more than they can chew. But I've appreciated how they have tried to engage across, across sectors saying, you know, in the instance of algorithms as a medical device? Right, they're really being challenged. This is like way beyond their, their historical or regulatory scope, and reaching out to communities. Same thing with, you know, how do you regulate data that's generated in the real world? Like, what, what is the utility of that? And so starting these conversations across boundaries, I think has really been, well, wonderful thing to see. Specific researchers who I am super enthusiastic about, sort of at this intersection of data and society, Ruha Benjamin, I think she's phenomenal. She's a sociologist at Princeton. Nancy Krieger, who's here at Harvard, has been phenomenal for the last I don't know, I think, like 30 years or something that she's been talking about the sort of social aspects of, of epidemiology and data in particular. And I'm just enthusiastic that we're getting traction at the federal level, there's a lot of work ahead, because I think that we'll soon find that when the rubber hits the road, that there are really meaningful differences still to overcome. But I think it's heartening that we, in principle, agree that data sharing can be beneficial. Figuring out, you know, beneficial, for whom, at what cost was trade offs, that's going to be the hard part.
Mark Lerner 38:07
Right, right. It's fascinating to hear about and think about what we can build for the future. Flavia, I want to give you a chance, is there anything, any final thoughts or anything that you want to leave the listeners with?
Flavia Chen 38:19
I would just say thank you, Mark, for hosting this podcast series and for giving me the opportunity to talk about my research as a TAPP fellow. It's been a phenomenal year, I think you would probably share the sentiment that it's gone too quickly. And I wish, I wish that we had had different circumstances so that you know, we could have had the fellowship cohort and this whole experience be in person. But nonetheless, I'm really grateful for the experience.
Mark Lerner 38:46
Likewise, and thank you so much for being here on the podcast. Really appreciated this conversation Flavia.
Flavia Chen 38:51
Thanks Mark.
Mark Lerner 40:01
Fellow Fellow is a podcast produced at the Harvard Kennedy School's Belfer Center, as part of the Technology and Public Purpose project. Music is by Zack Pfeiffer artwork by Zi Wang. I'm your host, Mark Lerner. Join us next time as we talk to the other fellows about the problems they're tackling. Thanks for listening.