Unless you or someone you know has contracted Covid-19, you’re likely just being exposed to the major coronavirus news: the vaccine trials, the updated infection prevention measures, the rising death toll. Smaller, more personal news about the pandemic tends to get drowned out on the open internet. To combat this, people who have tested positive for the virus congregate on their own, finding and founding dedicated online spaces where they post about the minutiae of a crisis more often described in giant, global arcs.
These groups are both distressing and hopeful. “I’m 21, with no prior health conditions,” writes one redditor on r/COVID19positive. “I advise anyone my age to please take all precautions. It hurts my fucking heart knowing I gave my family this horrible virus.” Commenters urge them not to be too hard on themselves, and to focus on getting well. On the Facebook group Survivor Corps, a poster has good news about an ailing loved one: His oxygen levels are finally holding steady. “This is the first improvement we have seen,” they write. “Thank you for your encouragement and your prayers.” Others mourn people lost to Covid-19 with memorial posts, list out their symptoms so people can compare and offer advice, seek help coping with the anxiety of their new or worsening diagnosis, or even just rant about anti-maskers they’ve encountered.
As infection rates continue to rise, these groups have become quite popular, drawing in hundreds of thousands of sick people seeking support. According to Jay Sinrod, founder of the Covid-19 Support Group (have it/had it) on Facebook, their members represent 102 countries from the UK to Tajikistan, and he sends a welcome message to about 300 people per day. Despite the much-heralded perils of social media groups like misinformation and harassment, for many people with Covid-19, these groups have been a source of solace. For medical researchers, they’ve been a source of data—free, easily harvestable, and ripe for analysis.
Online support groups tend to surge after any major crisis, whether it’s a terrorist attack or a natural disaster. However, according to John Naslund, who studies digital mental health at Harvard Medical School, the Covid-19 pandemic has created an unprecedented surge in online activity. “What we’re seeing is the impact of the pandemic on mental health,” Naslund says. “It’s increasingly difficult to access in-person services. Here in Boston, most hospitals have stopped outpatient mental health services. It’s interesting that they’re not considered essential.” In his research into online groups dedicated to mental health issues, he’s found such communities to be incredibly helpful for some people’s wellbeing. But “I want to be careful about saying it can work for anyone,” he cautions. “People who are still in crisis or have maybe more complex challenges need professional help.” Returns also diminish the less the group is moderated, as anybody who has ever been on social media could probably guess.
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Covid-19 support groups aren’t purely Pollyanna. “I was really surprised at the trolls,” says Jean Oja, moderator of r/Covid-19Positive. “People have posted that they tested [positive] for Covid and they’re in high school, but then we check them out and none of that is true. Or when a trans girl that was sick [posted]. The hate that came from people who are transphobic—I was very much not happy with that.” Still, Oja and the rest of her team of moderators (about half of whom are teenagers) work hard to scrub all that negativity away, even now when the subreddit has grown to more than 86,000 people. Meanwhile, Sinrod’s Facebook group has cut down on noise and misinformation but limiting all posts to personal experience—no screaming headlines allowed. Yet, even after the culling of meddlers, most groups are brimming with people (mostly women) eager to give testimonials. “I check Survivor Corps daily. It is a strong community. It continues to give me positivity and ways to give back,” says Dina Ganz Traugot, a 51-year-old Covid survivor from New York City.
Curiously, the other thing these groups are brimming with is researchers, who’ve been using support groups to ask people to participate in studies, donate plasma, or keep daily diaries of their symptoms.
Some groups were created with research in mind, like Survivor Corps. “We don’t like to call ourselves a support group. We mobilize our army of survivors to donate their plasma and engage in research trials,” says Nate Weinberg, social media intern at Survivor Corps. “We’re trying to stem the tide of pandemic and connect them to research that needs to be done.” For other groups, research interest was a surprise. “Multiple universities have messaged us over and over requesting we post their studies,” says Oja. “Now we have a pinned list of people looking for data from physical symptoms to plasma to emotional experience.” Sinrod has been working with digital health company Trend Community, which uses machine learning and natural language processing to draw data directly from the conversation.
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The risks of this research are much the same as the risks of using the social media groups in the first place: misinformation and emotional harm. “Our survey is built to try and discourage anyone from lying, but if someone wanted to throw a wrench in our research they could probably do this,” says Jason Brandenburg, who studies exercise physiology at University of the Fraser Valley and has been recruiting participants for Covid-19 related research on r/COVID-19Positive. The other data quality pitfall Brandenburg found is age, since redditors tend to skew younger. Still, to Brandenburg, Naslund, and Trend Community CEO Maria Picone, the biggest concern about conducting research in this way is actually all about the people they’re studying. “The way these groups work is by this feeling of trust with those you’re sharing this information with. You’re totally exposing yourself,” Naslund says. “Researchers going in could undermine that entire relationship. It’s important for researchers to be completely transparent.” Brandenburg adds that he wanted to be careful not to overburden people who are already struggling, which was a major issue for moderators like Oja and one of the reasons she vets researchers so carefully.
The potential benefits of this research method, however, are numerous, especially since in-person gatherings are now often unsafe. “Social media was the only way for us to do [large-scale Covid-19 research] unless we were affiliated with a hospital,” says Brandenburg. While overtaxing survivors should always be a consideration, social media research also tends to be less burdensome than traditional data collection methods—people never have to leave their homes, and in the case of projects like Trend Community’s, which are meant to be symptom trendspotting and hypothesis-generating rather than authoritative, many don’t have to do anything beyond sharing what they’ve already posted of their own volition. “People are keeping detailed diaries about their condition. This is really just a pilot project to demonstrate whether this is a viable approach to understanding disease manifestation and progression,” Picone says. “There is so much rich information in these conversation groups.”
Given the (relative) newness and rapidly changing nature of the pandemic, it’s too early to say how big a role mining social media for health data will play in combating the Covid-19 pandemic. “Just the fact that we do have so many studies coming in also gives me hope and makes me super happy,” Oja says. “It would be great if that can get us any closer to finding a vaccine or a treatment or a better way to deal with this or create better communities.” Naslund thinks the online communities themselves are likely to play an important role in rehabilitating people after this long period of tragic uncertainty. “It’s really important to understand how these online groups and other online venues for mental health can support people, whether they’re building resilience in communities or helping kids get back to school,” he says. “It’s very unlikely that they’ll be able to seek support in person for some time.” Imperfect though they are, right now, online support groups are one of the only social safety nets around.
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