Citizen Scientists: Submit Your COVID-19 Symptoms (Or Lack Of Them)
This story is part of Science Friday’s coverage on the novel coronavirus, the agent of the disease COVID-19. Listen to experts discuss the spread, outbreak response, and treatment.
As suspected and confirmed cases of COVID-19 skyrocket in the United States, testing availability remains limited, leaving people wondering if their cough is something to worry about. But testing isn’t just a balm for anxiety—public health officials need data about how far the new virus has spread to make decisions about how to best protect people, and where to send critical resources, like masks and gowns. Accurate information is the frontline of defense, but scientists still have pressing questions about the novel disease. For instance, how many people who are infected actually have symptoms? If you do have symptoms, how likely are you to get severely sick?
Until we are able to test both healthy and symptomatic people at scale, citizen science can help fill the gaps in tracking who has COVID-19. And the public health team that launched Flu Near You to track seasonal flu symptoms is now doing just that: soliciting your symptoms in the Covid Near You project.
Covid Near You co-founder John Brownstein of Boston Children’s Hospital explains what questions the project may help answer, and what trends Covid Near You will track—including why this data is so valuable to public health efforts. Sign up at www.covidnearyou.org to report how you’re feeling—whether you’re healthy or have symptoms.
Covid Near You is the first project in our month-long celebration of Citizen Science! At Science Friday, April is Citizen Science Month—each week this month we’ll be sharing a fun, socially-isolated way that you can participate in scientific research as a citizen scientist. See the projects, sign up for livestream discussions with project scientists, and find fun hands-on activities you can do at home at sciencefriday.com/citizenscience and signup for our citizen science newsletter for updates here.
We asked you if you’ve been experiencing COVID-19 symptoms. Here’s what you said.
Mark from Sauquoit, NY on the SciFri VoxPop app:
I have a sore throat, labored breathing, no fever, but just about every other symptom for the coronavirus. It’s been two weeks, and I still have belabored breathing.
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John Brownstein is the co-creator of Flu Near You and Chief Innovation Officer at Boston Children’s Hospital.
IRA FLATOW: This is Science Friday. I am Ira Flatow. How are you feeling today? Did you take your temperature yet? If you’re in an area with a lot of known coronavirus cases, maybe you’re doing that regularly. I know I am, up here in the New York City area, doing it twice a day.
But maybe you’re looking out for other symptoms besides a fever. How about a sore throat, that famous cough, or even just swollen glands? Mark in New York state called into our SciFri VoxPop app to describe the symptoms he experienced in the last couple of weeks.
MARK: I had a sore throat, labored breathing– no fever, but just about every other symptom for the coronavirus. It’s been two weeks, and I still have a bit of labored breathing.
IRA FLATOW: As testing continues to lag behind in the United States, there’s something you can still do to help public health officials keep track of the spread. Yes, it’s time for some citizen science with a project called COVID Near You. And it’s as simple as talking about how you’re feeling.
Here to explain more is John Brownstein, COVID Near You co-founder and chief innovation officer at Boston Children’s Hospital. And if you want to participate, you can go to ScienceFriday.com/COVIDNearYou. And please report how you’re feeling early and often. Welcome to Science Friday.
JOHN BROWNSTEIN: Great to be here.
IRA FLATOW: Give us a thumbnail sketch of how this works. What are the basics? What is COVID Near You? How do I help?
JOHN BROWNSTEIN: Yeah. So essentially, we’ve been crowdsourcing symptoms now– getting close to a decade. Actually, we started a first project in 2011 called Flu Near You. And this is actually around the movie Contagion. I think everybody is watching that movie right now. And we had this idea that we could start to really bring what we say the public in public health– get insights about what was happening in the community with symptoms that people were feeling before they ever touched their health care provider.
Think about it. Most of the illness that we’re seeing right now, people are not actually going to see a provider. They’re staying home, trying to get better, isolating themselves. Of course, we don’t have testing. Imagine you could build a community of people that are reporting symptoms and giving us an accurate picture of what’s happening around the world.
If you think about it, right now, we have a very limited view about what’s happening in the community. And if we can get people to contribute– to give us their symptoms, try to understand what’s happening– we can start doing a better job of understanding hotspots, understanding emergence, seeing if we’re getting better as a society, especially as we’re waiting for testing to really come into play.
IRA FLATOW: OK. So I go there, and I just tell you how I’m feeling? And is it just once, or do I continually update this?
JOHN BROWNSTEIN: We’re looking for feedback from people continuously because, of course, you might be healthy one day. Another day, you might get sick. We would definitely want to know that.
On the same trend, if you’re sick right now, we’d love to know if you’ve recovered. And we’d love to know if you got a test because what we’re trying to do is map symptoms to testing. So the more data that we can pull, the better.
And we’re making this all available publicly. The data is out there for people to see who in their zip code is experiencing symptoms, who’s been tested positive. And ultimately, it’s about making the public a real stakeholder in public health.
IRA FLATOW: So just to clarify, you want to hear from people who are not sick, too– not just people who are feeling sick to participate.
JOHN BROWNSTEIN: Absolutely. We need a good denominator because, if we just get people that are reporting illness, we have no idea about the underlying population. But if we get people reporting regardless of how they’re feeling, we can build a denominator to come up with a rate of illness in a particular community– much more valuable than just people reporting illness.
IRA FLATOW: Mm-hmm. So you have a map of people who have coughs, people who don’t have coughs, and people who have positive tests. So what do you do with that information? And why is that so useful?
JOHN BROWNSTEIN: We’re trying to encourage people to do a better job of social distancing, giving them a real perspective of what they’re actually trying to do. It’s very hard, right? If you’re home healthy, it’s hard to understand. Well, if you give a picture of what’s happening in the community, or maybe adjacent communities, you’re more likely to see the value of reporting.
The other side of it is the aggregate data can be incredibly helpful to the public health at large. Local public health, but also federal– they’re trying to understand resource allocation, trying to understand where to implement testing. They’re trying to understand where hotspots are emerging.
We know that New York City right now is a big hotspot. Where is the next hotspot going to emerge? This data can give that insight that we so desperately need.
IRA FLATOW: Don’t the hospitals already know by talking with each other where the hotspots are?
JOHN BROWNSTEIN: You’d think, in a perfect world, there would be so much exchange of information. That is, actually, a core issue of our underlying health system around interoperability. Now, there are major initiatives to try to fix interoperability to get data to share.
But also think about this. The hospitalizations that we’re seeing are just the tip of the iceberg in terms of actual illness. Most people getting sick from COVID are not actually ones that are getting hospitalized. They’re not having any interactions with the health system.
So how do you start to understand what’s really going on in the community? It’s not going to be from looking at health care data. It’s from looking at what people are experiencing themselves. And self report represents a huge opportunity.
IRA FLATOW: Interesting. So you collect the data. Do you share it with other people who analyze it? Or are you doing the analysis?
JOHN BROWNSTEIN: So we have a team of epidemiologists at the hospital and Harvard Medical School. But we’re also working closely with government agencies. Now, we’re not sharing any identifiable information.
But the idea is of course, in aggregate, to be able to share the information so that public health can respond appropriately. That’s the data that can be incredibly useful. But it’s very similar to the data they’re already posting publicly, directly on the web, that everyone can see.
IRA FLATOW: We’ve been hearing and watching on the news people looking for equipment– whether they’re ventilators, or what– and then saying, we don’t have enough of them. Maybe we can send what we have to the hottest hotspots and then move them around the country. Would this kind of help that?
JOHN BROWNSTEIN: Exactly. So what we’re trying to do is give early insights into what’s happening. If you think about it, when you’re in a situation where you’re needing ventilators, you’re already well into the epidemic, right? So the severe cases represent a future, not the present.
So the first step in the community is having underlying illness, mild illness, that is bubbling up. If you get inside then, you can already make resource allocations to prepare for that future of severe cases that you will eventually arrive. And that’s why it’s so important to get this early window, this early wave of illness through these tools.
IRA FLATOW: Mm-hmm. We have a listener– Sam, in Kentucky– who called into our Science Friday VoxPop app with this question.
SAM: I want to know, how are they able to give us accurate statistics for how many people are infected if they’re not testing everybody who is symptomatic?
IRA FLATOW: A legitimate question, was it not?
JOHN BROWNSTEIN: Absolutely legitimate question. What we’re doing is something called syndromic surveillance– getting symptoms and a case definition of symptoms to understand likely COVID. Now, we can’t diagnose COVID just based on symptoms. We need testing. But the signals in that data– with enough people reporting, you’re going to get signals in that data that accurately reflect what’s happening in the community.
We know that flu is coming down because lab testing shows that we have less and less flu circulating. So these spikes in these symptoms– they can be attributed to COVID. Even if we can’t guarantee it, it gives us a real indicator, sort of a canary-in-the-coal-mine-type view of what’s taking place.
IRA FLATOW: Can you separate then symptoms for the regular flu versus COVID?
JOHN BROWNSTEIN: There’s case definitions that are different for flu and COVID. Obviously, we’re seeing a lot of shortness of breath and different types of elements. We’re still trying to understand the symptomology. But absolutely, there is important differences that we can separate out. But they’re both respiratory illnesses, at the end of the day.
IRA FLATOW: Mm-hmm. Let’s give out that link. You have the link where people can go to?
JOHN BROWNSTEIN: Yes. It’s ScienceFriday.com/COVIDNearYou.
IRA FLATOW: OK. We’ll repeat that a few times so we can get enough people because I want to get enough people to you. And in that sense, how many people are you aiming for?
JOHN BROWNSTEIN: We would love a million people in the system. That’s the ultimate goal because that gives us highly granular data. But if we can bump ourselves up to anywhere near that with this community, which I know is so engaged, it will do a huge amount of good to really being able to combat COVID.
IRA FLATOW: Well, let’s give a preview to people who want to use this site. They go to this site. What will they see?
JOHN BROWNSTEIN: So they’re going to see a map of reported cases that look like COVID, so the symptom set that we think resembles COVID. And then they’ll see people actually reporting confirmed cases because some people are getting tested. So you’ll see places around the country where people have had positive tests.
And then you’ll see the reporting function. So people can report whether they’re healthy or sick. And if they report that they’re sick, then they can pick from a list of symptoms like fever, and cough, and shortness of breath.
And then we’re going to collect a little bit of demographic data because we want understand how COVID is impacting different age groups, and gender, and geographies. And then we’re going to collect mobile phone information so that we can stay in touch, get insights about how people have recovered, whether they got a positive test, and also eventually disseminate information about resources and data about what’s happening in their community.
IRA FLATOW: And how long will you be going on with this project?
JOHN BROWNSTEIN: Well, we will go [LAUGHS] on and on. So we’ve been running Flu Near You now getting close to 10 years. And COVID Near You is an offshoot.
But eventually, these things merge into one real platform where we keep people engaged– because, honestly, we have coronavirus now. We will see other respiratory pathogens emerge in communities. And the best thing we can do is to have these systems ready– not trying to build in the moment of a pandemic, but actually have capacity from the outset.
IRA FLATOW: Yeah, so this is really a good citizen science project.
JOHN BROWNSTEIN: In my view, this is one where you’re really contributing to something valuable in terms of response. But it’s also giving data back cause people can educate themselves and make informed decisions for themselves and their family.
IRA FLATOW: Mm-hmm. I know you also work on a project called HealthMap, which saw evidence of the coronaviruses as early as December when we first heard about it in Europe and China. Tell us about that.
JOHN BROWNSTEIN: So we’ve been running, in parallel, a sister site called HealthMap.org, which is a tracking tool for emerging infectious diseases around the world. We do this through machine learning and AI and doing this in many different languages to look for signs of outbreaks. And this is through mining of local news, chat rooms, blogs, social media where we’re looking for signs of something unusual happening.
In late December, we saw a cluster of respiratory illness around a seafood market and Wuhan through a local Chinese source. We also had collaborators that were looking in WeChat and Weibo, Chinese social media sites that were talking about this illness. And we were flagging this to our collaborators at WHO and really started ramping up our surveillance beginning in January.
Ultimately, we ended up building this massive line list of cases for the globe to try to create as good a data set as possible to feed mathematical models that would do forecasting that really build projections of where we’re headed. And so this data, whether it’s data from HealthMap or COVID Near You– the data itself is so valuable to feed into models because, the better data you have, the better model outputs you have to understand the trajectory of disease. And of course, everyone’s asking, how will this peak? When will this end? The better data we have, the more accurate we can make our estimates.
IRA FLATOW: Just a reminder, if you’re just listening and tuning in right now, I’m talking with John Brownstein, COVID Near You co-founder and chief innovation officer at Boston Children’s Hospital on Science Friday from WNYC Studios. I just saw on the news the other night something called HealthWeather.US where there’s a company– I think it’s called Kinsa– that makes oral thermometers that broadcast your temperature out onto the internet so that they can crowdsource where people are getting a higher fever. Are you familiar with that?
JOHN BROWNSTEIN: Yeah, I’m familiar with Kinsa. It’s part of an ecosystem of smart thermometers that are out there for the market. And they’re interesting because it’s not just, you’re collecting your data, but you can feed that data into an app and an aggregate. Doing a map of fevers around the country is incredibly valuable.
There’s a range of different tools that are out there, smart thermometers. There’s wearables, like a smart ring called Oura or a wristband called Whoop. All of these are collecting temperature and associated symptoms.
Again, those kind of tools become incredibly valuable an aggregate. You hope that some of that data becomes more available for analytics, the broad academic community, as well as the CDC, and other public health so they can ultimately see the most value in the data. But it’s exciting to see this broad set of information streams that are becoming available to all triangulate around what’s happening in the community.
IRA FLATOW: Mm-hmm. And now, I know that you work in a hospital in Boston where there are also a large number of coronavirus patients. Can you give me an idea of what the mood is like there?
JOHN BROWNSTEIN: Yeah. Well, listen, it’s both know a challenging time, but it’s also amazing to see our health care systems working together– a lot across cost collaboration, a lot of attempts at innovation. We have this amazing project where we’re trying to build a 95 mask from a few dollars in parts, so really a lot of ingenuity.
At the same time, frontline health care is completely overwhelmed and getting to capacity. So it’s stressful and anxious. But at the same time, we’re seeing some of the best of humanity as well.
IRA FLATOW: And your project is something that people who– we’re all at home now, or most of us. We’re looking for something to do besides watch movies.
JOHN BROWNSTEIN: Yeah. [LAUGHS]
IRA FLATOW: Your project, a citizen science project, is something people can participate and feel like they are helping out some way.
JOHN BROWNSTEIN: You can COVID and chill. Then you can Netflix and chill, yes. Enter the data– a few seconds. You’re actually doing something. And then, yes, you can stream your favorite TV show.
IRA FLATOW: All right, let me just remind everybody how to do that. To participate, go to ScienceFriday.com/COVIDNearYou– ScienceFriday.com/COVIDNearYou– and you can report how you’re feeling. You don’t have to be feeling badly, right, John?
JOHN BROWNSTEIN: No, yeah.
IRA FLATOW: You can be feeling well.
JOHN BROWNSTEIN: We want everyone to report.
IRA FLATOW: Everybody should report. It’s easy to do. And we wish you great luck, Dr. Brownstein, in your efforts here cause it’s something we really all could use.
JOHN BROWNSTEIN: Well, thank you so much.
IRA FLATOW: No, thank you for taking time to be with us today– Dr. John Brownstein, co-founder of the COVID Near You citizen science project, chief of innovation at Boston Children’s Hospital.
Christie Taylor was a producer for Science Friday. Her days involved diligent research, too many phone calls for an introvert, and asking scientists if they have any audio of that narwhal heartbeat.
Ira Flatow is the host and executive producer of Science Friday. His green thumb has revived many an office plant at death’s door.