Why an MIT economist is teaming up with TikTok influencers to gather data on a potential COVID-19 symptom

• CancelCovid is a new initiative focused on tracking one possible symptom of the novel coronavirus: the loss of one's sense of smell (known as anosmia or hyposmia).
• The all-volunteer organization is tapping TikTok influencers to spread awareness about anosmia and encourage social-media users to share data on whether or not they've lost their sense of smell.
• The nonprofit group, which is led by an MIT economist, medical doctors, marketers, and other businesses with skill sets relevant to the initiative, hopes it can eventually offer data to public health experts on previously unreported incidences of anosmia.
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Some influencers have come under fire in recent weeks for not adhering to social-distancing measures and other public health guidelines during the coronavirus pandemic. But now a team of academics, medical doctors, and marketers are asking them to join a campaign to help stop the virus' spread.

The initiative, CancelCovid, is focused on spreading awareness about and collecting data on incidences of anosmia — a sudden loss of smell — which the World Health Organization and CDC have recognized as a COVID-19 symptom (though the CDC noted in a recent post that "more information is needed to understand its role in identifying COVID-19").

The project was originally conceived by Peter Hancock, a former chief risk officer at JPMorgan, and Claire Hopkins, an ENT Surgeon and Professor of Rhinology at King's College, London who looked at incidences of anosmia and hyposmia among COVID patients in South Korea, China, and Italy. The team created a website called SniffOutCovid.org where it described itself as "a nonprofit collaboration between leading medical researchers and talent in academia and technology to track COVID through social media."

The SniffOutCovid project folded fairly quickly, but was reborn a few weeks later under a new team of volunteers that included Hopkins and experts from academic institutions like MIT and companies like the ad-tech firm ViralGains, influencer-marketing platform Mavrck, scientific due-diligence firm Science Bounty, and VC firm Pallasite Ventures.

CancelCovid's initial goal is to spread awareness about loss of sense of smell as a possible COVID-19 symptom while also gathering data on the prevalence of anosmia through a survey on its website.

"More accurate reporting of individuals who have contracted COVID-19 is a critical step in helping restore our economy on a national level and subsequently, international level," said Erik Brynjolfsson, an economist at MIT's Sloan School of Management.

In order to get the word out that losing one's sense of smell is a possible sign that an individual may have contracted the novel coronavirus, the CancelCovid team is tapping influencers to create TikTok videos for a #cancelcovidsmellchallenge hashtag.

"Video content seemed to be the right format because we're trying to highlight folks actually smelling something and not being able to smell it," said Lyle Stevens, the CEO of the influencer-marketing platform Mavrck, which is running CancelCovid's influencer campaign. "We're using some of the nuances of TikTok to spread that message as quickly as possible."

Because the awareness campaign is being running on TikTok, Mavrck has focused on music and humor for its influencers' videos — two content categories that creators and marketers have found success with on the app in the past.

Some influencers have posted videos of themselves smelling random objects in an effort to encourage their followers to do the same. Other creators are dancing to a custom "Cancel Covid" song created by the TikTok user Chaz Bruce. All TikTok influencers have worked pro-bono thus far, though Mavrck said it is considering paying creators down the road (at reduced charity rates) if the company thinks a particular influencer could have an outsized impact on the campaign.

"It's difficult to make a trend with somewhat of a more complicated call-to-action, but it's for the greater good," said Greg Auerbach, a TikTok user with nearly one million followers who volunteered to make a video for the CancelCovid smell challenge. "We brainstormed ideas with the marketing company and some other creators [for] concepts we thought would catch on."

"We wanted to approach this similar to the famous Ice Bucket Challenge that did so well so many years ago," Stevens said. "You smell something, you can prove whether or not you can smell it, but then you mention or challenge three other people to also do it."

It's still early days for the campaign, which launched on TikTok at the end of April and will continue for the foreseeable future. Mavrck said 37 influencers have posted videos so far. The campaign has driven 4.5 million video views and over one million engagements ("likes," comments, and shares) on TikTok.

"TikTok is well aware of this initiative and what we're trying to do here," Stevens added. "We've collaborated with the social networks to make them aware."

Using TikTok influencers as a way to gather healthcare data

Beyond spreading awareness about anosmia as a possible marker for COVID-19, the CancelCovid team hopes to collect data from social-media users on whether they've recently experienced a loss of smell.

The CancelCovid website currently includes a short single-question survey asking users if they've experienced the symptom. Some TikTok influencers have asked their followers to submit their smell results online as part of the non-profit's campaign.

"The way the question and answer are phrased, we can find out whether it came up suddenly and whether you've completely or partially lost your sense of smell," said Tod Loofbourrow, CEO of the ad-tech company Viral Gains, which is powering CancelCovid's survey. The company is using marketing technology (and third-party data providers) to determine each survey respondent's location and age in order to understand more about the prevalence of anosmia in certain populations.

"We can do things like, by region, see where sense of smell loss is growing and therefore by implication, COVID is growing," Loofbourrow said. "Identify areas where maybe it's coming. That data is useful for researchers and public health folks and people trying to identify the spread."

Loofbourrow said the response rate for its survey is currently low, but the organization hopes to collect a statistically significant number of responses in the coming weeks as more social-media users learn about anosmia through its marketing and earned media efforts.

Having a simpler way to collect data on COVID-19 without requiring a nasopharyngeal swab test is appealing, though it's still too early to tell whether tracking anosmia is an effective way of understanding where the coronavirus pandemic is spreading. 

In the near term, the team at CancelCovid is focused on driving awareness about anosmia as a potential COVID-19 symptom. The organization found that 55% of the 2,500 Americans it surveyed between May 10 and 13 were not aware that the sudden partial or complete loss of the sense of smell is a potential indicator of a novel coronavirus infection.

"What we're trying to do is spread awareness, not of the virus, but of that symptom," Stevens said. "This campaign will persist well through the summer ... And then depending on the trajectory of the pandemic, CancelCovid could morph into other campaigns or initiatives around coronavirus."