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A mysterious illness has killed 37 people and severely damaged the lungs of roughly 2,000 people. The disease will continue to spread, because no one seems to know what exactly is causing it. Part of the problem may stem from asking the wrong questions. A new online survey from researchers at Harvard hopes to fix that.

The project, called YouVape, serves two purposes: to let people check to see if they have symptoms of vaping-related pulmonary disease and to give researchers access to more specific information around patient symptoms and what they vape. This will not only yield more about where the disease is popping up but potentially what’s causing it.

Yulin Hswen, a researcher based at the Harvard-affiliated Boston Children’s Hospital who’s behind the YouVape project, first took an interest in the subject because of the fanatical blogs around vaping. It was not because she suspected it might cause a public health crisis. “I didn’t see that coming,” she says. So when the infectious disease tracking tool she works on called HealthMap registered a health alert from Wisconsin’s Health Department about eight lung injury cases related to vaping in July, she didn’t think too much of it. But HealthMap, which pulls from data across the web, kept logging more instances of illness, and in August, she and her team watched as it totaled 119 cases.

To date, the project has documented 2,197 cases—several hundred more than the Center for Disease Control and Prevention’s 1,888. HealthMap updates in real time, giving it an edge over the CDC, which updates every week. Now she’s developed YouVape, which soft launched last week, to find out what is behind the mysterious illness. (At the moment, Hswen doesn’t have any data to share about what YouVape has discovered, as it’s currently getting off the ground.)

For the YouVape project, researchers will be looking more at where the disease is coming from than where it’s going. “We were asking questions that are more about the type of substances that you’re using on top of the symptomatic information,” says Hswen, “We want to get at more of the social behavioral parts.”

Disease outbreaks are often associated with some sort of social change, she says, like when a group of people stop vaccinating their children, for example, or decide to change the way they prepare food. E-cigarettes have been around for decades, but they’ve only become popular in the past few years. Certainly there are now more aspirational brands associating those white plumes with cool.

And there are differences in the way people are vaping now. “People vape as much as 20 to 30 times a day,” says Hswen, “I don’t think anyone knew the extreme amounts of vaping people would do daily.”

Understanding the culture around vaping is crucial to asking the right questions and ultimately identifying the problem, she says. Much of those answers may lie in vape blogs and social threads. There is a certain obsessiveness surrounding vaping that prizes a do-it-yourself glamour. E-liquid, the stuff you put into a vaporizer or e-cigarette to form those iconic pools of smoke, is relatively expensive. So people come up with their own cheaper concoctions, mixing in varying levels of either nicotine or THC, and sharing them around the web. “People are vaping everything from Coca-Cola to adding herbal oils like lavender,” says Hswen. A person can develop a whole personality around devising these vaping hacks as well as their own legion of followers.

Studying how people are vaping and how they’re talking about vaping is key to asking the right questions when heath problems arise. A general practitioner might ask a patient about their smoking or drinking habits but not whether they’re vaping or more specifically “Juuling.” In doing so, they might miss out on information that would lead to a diagnosis. YouVape is designed to avoid those mistakes.

The design of the site is similar to another one that Hswen developed to surveil influenza in China called Thermia. The organization gave parents access to an online symptom survey to see if their children might have the flu. In tandem, parents used a mobile thermometer to continuously monitor their child’s temperature from under their arm. Over the course of two years and 45,000 observations, Thermia was able to predict influenza outbreaks a month before China’s National Health and Family Planning Commission influenza surveillance system. 

By targeting people searching for answers online and then crowdsourcing people’s experiences, Thermia and YouVape have an edge over the way that governments currently track disease.

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