IRA FLATOW: This is Science Friday. I’m Ira Flatow, Thanksgiving is just around the corner. Time to hug and kiss all the relatives right when the flu season is getting underway. For most of us, flu season might mean making that inconvenient trip to the pharmacy you’ve been putting off, getting that little jab in your arm, the flu shot. 

But for my next guest who is living with cystic fibrosis, flu season is altogether another thing. And he has agreed to share his story with us today. Matt Smith is a biologist and volunteer with Attain Health, a patient care program specializing in cystic fibrosis. Welcome to Science Friday, Matt. 

MATT SMITH: Hi, Ira. Thanks for having me. 

IRA FLATOW: What is the flu season like for you? 

MATT SMITH: Yeah, so as you mentioned, I have cystic fibrosis, which is a life threatening lung disease. And so for me, the flu can be really dangerous. I would get much, much sicker than a normal person. So whereas you may end up staying at home for a few days from work, for me, I could end up in the hospital for a few weeks. I could lose a good chunk of my lung function and really it could even possibly be fatal. 

So for me, flu season is a super stressful time of year. 

IRA FLATOW: Can you get a flu shot? 

MATT SMITH: Yes. So even with CFR, you’re strongly encouraged to get a flu shot. But there are certain circumstances in which you wouldn’t be able to get one. So I actually haven’t gotten the flu shot yet this year. And the reason is because I’m on some medications that they don’t want me to have the shot yet. So it’ll be probably two weeks before I’m able to get it, and then another two weeks before the immunity will kick in. So I’m a little bit of a sitting duck for the next month. 

IRA FLATOW: So you need to take special precautions to avoid getting the flu, right? 

MATT SMITH: Oh yeah, absolutely. I’m constantly thinking about infection control. Anything that comes into the house, whether it’s packages or people, I spray it down with Lysol. When I go out in the public I wear a mask, and I’m always sort of vigilant for people who might be sniffling or coughing and do my best to run away from them as fast as I can if I hear that. 

IRA FLATOW: So you have to avoid meeting people. 

MATT SMITH: Yeah, absolutely. I try to avoid going to crowds, restaurants, concerts, that sort of thing. And it does sort of limit the amount of time I’m able to be around my friends, which is kind of a bummer. Actually my 25th high school reunion is next week, and I’m not going to be able to make it. 

IRA FLATOW: I’m sorry to hear that. Anything else you’d like people to know? 

MATT SMITH: Yeah, I think that I dislike– I know some people are kind of apprehensive about getting the vaccine. But I’d like people to think of it as an opportunity to help out other people. And it’s not just people with a rare lung disease like me. It’s anybody with asthma or COPD or kidney disease or heart disease or the elderly or young kids. There’s millions and millions of vulnerable people so I hope that people will make an effort to go out and get the shot. 

IRA FLATOW: All right, Matt, thank you for sharing that with us. And those are good words and good advice. Matt Smith is a biologist and volunteer with Attain Health, a patient care program specializing in cystic fibrosis. And as Matt says, get your flu shot. It is one way you can help out this flu season, by protecting the more vulnerable among us. But we’ve got another way you can help out. We’re collaborating with the group Flu Near You. 

On a citizen science project to track the flu spread across the nation in real time this flu season but we need your help to do it. Here with the details are John Brownstein, co-creator of Flu Near You, Chief Innovation Officer at Boston’s Children’s Hospital. Welcome to Science Friday. 

JOHN BROWNSTEIN: Great to be here, thanks so much. 

IRA FLATOW: You’re welcome. And our own very own education director, Ariel Zych. Good to have you back, Ariel. 

ARIEL ZYCH: Hey, Ira, how’s it going? 

IRA FLATOW: All right, let’s talk about what people can do. John, what’s the idea behind Flu Near You? 

JOHN BROWNSTEIN: Yeah, well the idea is pretty simple. And it’s to get a better picture of influenza and how it spreads across the country. Generally, it’s very hard for us to know when a flu season is beginning, how severe it is in real time. We generally look at counting cases of people coming in to hospital visits, or through laboratory confirmation. But that can take time, and not everybody they get sick actually goes to the doctor. 

So it really gives us an incomplete picture of the flu. And a very delayed one. So our idea was super simple. There’s a lot of work going on in crowd sourcing, but not that much happening in the public health domain. But in that sense, from somebody wanting to contribute to the public health infrastructure– and what we say is putting the public back in public health– we say just spend a few seconds and tell us how you’re feeling on a weekly basis. 

And if you get symptoms, report them. Because what we can do then is identify influenza type illness, and actually track flu as it spreads through communities, through states, and through the country to really get a jump start on what is actually happening with the flu. This is essentially what we’ve been doing for years with Flu Near You, and what we think we can really ramp up with the listeners. 

IRA FLATOW: Is this a replacement for the flu data that the Centers for Disease Control and Prevention put out? Or is this a different kind of project? 

JOHN BROWNSTEIN: It’s absolutely not a replacement. In fact, we work with the Centers for Disease control very closely. This gives them another perspective on illness happening at the community level, rather than in health care systems. And so this gives us a really interesting picture about what’s taking place. The CDC can use this data to understand when flu is starting, how bad the flu season is, how well the vaccine is working. But even more importantly, it’s an engagement tool. 

It explains to people what’s happening in the community and really gives a sense of why it’s so important to get the flu shot. 

IRA FLATOW: All right, Ariel, you have whetted our appetites, our listeners’ appetites. How can our listeners get involved? What are we asking all our citizen scientists out there to do? 

ARIEL ZYCH: Sure, well it’s surprisingly easy. If you’re one of those people who likes to complain about how you’re feeling, or even if you’re one of those people who likes to brag about how you’re feeling– I’m feeling great today. That’s about as complicated as this gets. So if you go to sciencefriday.com/flu, we’ve got a sign up link for you. 

And you sign up with your zip code and your email address, and in just a few short moments, you get to contribute to the nation’s largest self-reported flu-like symptom map. And you press a button, it says, yeah, I’m feeling great today. And every week you have an opportunity to report how you’re feeling. And you can even report for other people in your household. 

So if you want to be your local captain of influenza monitoring, you can report for the folks in your home and say, yeah, I’m feeling great. My son’s feeling great. Maybe my partner is feeling kind of coughy today. And those symptoms– there are pretty little buttons to press, so you can press a coughing button or a rash button, or whatever you want to press to kind of indicate the symptoms you’re feeling, and you’ve contributed to that map. 

IRA FLATOW: And all you have to do is do it once a week. 

ARIEL ZYCH: Yeah, and if you’re a Space Cadet and you need a little reminding, we also have set up a texting reminder system so you can get you can sign up to get a weekly reminder text, complete with a fun flu fact or prevention tip. Just to add a little carrot for you. So if you want to get a weekly text from us, you’ll also be able to sign up for that at sciencefriday.com/flu. 

IRA FLATOW: So no one’s asking you to take a cotton swab of your cheeks or your nose and the send a sample back to anyone. 

JOHN BROWNSTEIN: No, but we are experimenting with some of those projects as well. We actually have an ongoing collaboration with the Centers for Disease Control in a couple of states right now, where we’re doing just that. But the reality here for what we’re looking for the listeners is just to report symptoms. Because that subset of symptoms that relate to flu can really help us understand what is going on with this virus, and really can provide important information to local communities, as well as the country. 

IRA FLATOW: Will people be able to go on a website and actually watch the spread? And see how their data is contributing? 

JOHN BROWNSTEIN: Absolutely. So at Flu Near You, we actually provide all the data in real time. This isn’t like general tools that are out there, where you’re a data source, but you don’t actually get to see the data. In fact, you get to see the data live, real time, what’s happening. Of course, we keep all the data private. We’re not giving up any individual information. But in aggregate, we’re seeing how this virus spreads across the country. 

IRA FLATOW: And in seeing this, can you tell how well the vaccine is working? 

JOHN BROWNSTEIN: So we actually collect data from people about whether they’ve gotten the flu shot. So from that perspective, very quickly, we can see how well the flu shot is doing. Because we can compare the people that have gotten the flu shot, versus those in the system that haven’t. So we can see very clearly how well the match is going in, and how well it is doing across different demographic groups. 

IRA FLATOW: Can you also tell by age group? How well it’s doing. 

JOHN BROWNSTEIN: Exactly. The level of detail we get is really unique and very different from more traditional surveillance systems, because we get exact age. So we know how flu’s affecting different age groups. The young, the old but also across gender, and also we get it across at very high resolution geographic data at the zip code level. So that makes it a really rich source for influenza research and surveillance. 

IRA FLATOW: So what you really need are people of all ages in all places to contribute to this, so you can get a wealth of data. 

JOHN BROWNSTEIN: Yeah, we want this to be highly representative of the country. So everyone is included. We want everyone to participate. 

IRA FLATOW: Ariel, the one thing that’s always confusing people is the stomach flu. Is that the flu? 

ARIEL ZYCH: No, don’t be confused everyone. They’re different. And we like to say the stomach bug, because there’s a whole different set of symptoms. When you get a stomach bug, it’s like everything waist down. It’s stomach intestines, all the yucky stuff. With the flu, it’s everything waist up, it’s your lungs, it’s your throat, it’s your head, it’s your nose. 

And those symptoms are different, and that’s because they’re caused by something different. And the course of all the symptoms are something different. So please don’t confuse the stomach flu with the influenza that we’re talking about today. 

IRA FLATOW: And this being especially interesting, and maybe it will make people remember or try to participate. This is 2018, we’re 100 year anniversary of that really deadly 1918 flu, aren’t we? That wiped out tens of millions of people around the world. 

JOHN BROWNSTEIN: Yes, we can’t forget that we do have the annual flu season. But there are those rare moments where we have major pandemics that can really have massive impact across the globe, really. And so that adds a whole level of importance to flu surveillance. The sooner that we can get a jump start in what’s happening, the more that we can intervene. 

ARIEL ZYCH: Yeah, and I would add too the exciting thing about Flu Near You for me, is this baseline idea. So having people who are healthy reporting how healthy they are, as well as people who have minor symptoms, give you this nice kind of low grade picture of how people are feeling. 

And so when things like that– when crazy things do happen, whether it’s a emerging pandemic or an emerging disease, this citizen led initiative to monitor the flu has this kind of baseline background data already, which is pretty rad. 

IRA FLATOW: I’m Ira Flatow. This is Science Friday from WNYC Studios. Talking with the Flu Near You project. That’s interesting. I’m glad you brought that up again, because I think people, when they hear this, are going to say, well, if I don’t have the flu, I don’t need to press that button. But you’re saying, yes, we want you to report back, even if you’re healthy. 

JOHN BROWNSTEIN: Exactly. We need a denominator in order to really understand what’s happening. So yes, we will take the data from people reporting just purely on illness, but getting a sense of the people that are not sick helps us just as much, because then we can understand the impact it’s having in different groups in different ways. So that exactly, we want people reporting consistently throughout the season. 

IRA FLATOW: Ariel, this sort of a new trend where people, everyday citizens are generating their health data. And citizen scientists, they’re not PhDs, they’re not epidemiologists– 

ARIEL ZYCH: With totally normal people, it’s wonderful. It is a trend, it’s a big deal. Citizen science is this thing that is like truly my favorite, most empowering part of science is how we do it right now. And this stuff like what we’re talking about here, where with the tap of a button you’re reporting into a national mapping tool of influenza is the type of science that’s truly been unlocked by recent technology. The fact that we all have these super smart devices in our pockets. 

And those of us who don’t, who have flip phones, they can go home and use the internet to do this. That’s insane and it’s really cool. And what John mentioned about representativeness, right, so this idea that you don’t necessarily have to have health care to participate in Flu Near You. You don’t have to be in a certain part of the country, in a major city, or be near to a health care facility to participate in Flu Near You. 

That’s the type of coverage and the type of completeness that something like citizen science can provide. And it’s why I think this is such a fun thing to do together as a listenership. So listeners, I think you’re going to be really good at this. 

IRA FLATOW: And I think whole schools can get together on this, right? Get the students and their parents involved. 

JOHN BROWNSTEIN: Yeah, absolutely. We love for organizations to really commit their membership. Whether it’s a school, or an office, absolutely. 

IRA FLATOW: Tell us, OK. Let’s wrap it up by talking about ABC’s. How do you get involved in this? What should you do? 

ARIEL ZYCH: Right, so absolute first thing to do is go to sciencefriday.com/flu. You’ll learn all about the project. And if you’re feeling lazy and just want to sign up immediately, there’s a bunch of bright red links. You just click on those. And you will get to our registration page, super easy. 

I think it takes a minute to register. And then you’ll be in the system, you’ll be ready to go, and you’ll be reporting your flu symptoms. And that’s it, it’s really that easy. And then if you’re a nerd– and/or are very interested– 

IRA FLATOW: We don’t have any nerds. 

ARIEL ZYCH: We don’t have– 

IRA FLATOW: We have no nerds. 

ARIEL ZYCH: That’s a strange thing to say on Science Friday. So if you happen to be really into health data, or you want to see your local flu forecast, then you can also go to Flu Near You and see where your data fits in this larger picture of influenza like illness. And it’s kind of fun because they’ve also got the CDC data there too, so you can do a little back and forthing between your state data from the CDC and your state data from Flu Near You. 

And if you’ve got anybody you know in certain parts of the country that seem underrepresented, you can call your cousin in North Dakota and be like, cousin, report your influenza symptoms. And kind of make it a party. I think that’s what we’re going for. 

IRA FLATOW: We have a competition about how many people in what state can sign up the most people. 

ARIEL ZYCH: Oh boy, I know I’m really excited for that. Alaska, I’m looking at you. I think you can do it. 

IRA FLATOW: And how many– and John, how many people would you like? What kind of size would you like? 

JOHN BROWNSTEIN: The more, the merrier. We’ve had, in past seasons, in the tens of thousands. 30, 40, 50,000. If we could push it to 100,000 this year through this partnership, that would be amazing. And really just be incredibly transformational for how we think about looking at diseases and communities. Really, the idea of aging individuals directly, it can really be democratizing in terms of how we think about public health. 

IRA FLATOW: All right, let me thank both of you. John Brownstein, co-creator of Flu Near You and Chief Innovation Officer at Boston Children’s Hospital, and Science Friday’s Education Director, Ariel Zych. Thank you both for taking time to be with us today. 

ARIEL ZYCH: Thanks a lot. 

JOHN BROWNSTEIN: Thank you so much. 

IRA FLATOW: And our listeners can find more information, and they can sign up at sciencefriday.com/flu. I’ve already done it. Sciencefriday.com/flu. I signed up, so join me, it’s going to be fun. And we’ll be tracking our progress all winter long. Charles Bergquist is our director and senior producer Christopher Intagliata. Our producers are Alexa Lim, Christie Taylor, and Katie Hailer. 

We had technical engineering help from Rich Kim, Sarah Fishman, Kevin Wolfe, and a very special thanks to all the great folks here at WUSF in Tampa, who made us feel so welcome in their studios today. And of course, every day is Science Friday now, because we’re active on Facebook and Twitter and Instagram. And if you have a smart speaker, you can say, hey, please, play Science Friday whenever you want to. You can also email us scifri@sciencefriday.com. I’m Ira Flatow in Tampa.

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