Puja Vohra’s mother-in-law, father-in-law, and brother-in-law were all diagnosed with COVID-19 earlier this year. They were in Delhi, India, and she sat feeling helpless in Newton, where she lives with her family. She scoured the internet for a sense of comfort: She wanted to hear from people who had experienced COVID-19 themselves.
She came up short.
COVID-19 has been the biggest story of 2020, but Vohra said she wanted to hear more human perspectives on recovering from the virus.
“There’s an information overload of COVID in news articles, in journals, people giving their opinions from everywhere. But what we were looking for was hearing stories of other people who have gone through it,” said Vohra, 48. “We couldn’t find any forum or collective place where people who had recovered from COVID are providing some sort of feedback or telling their story.”
She called her niece, Sanya Verma, a junior at the University of Michigan studying Information Science, and told her she thought there was an opportunity to form a global community for users to share their experiences with COVID-19.
Soon, they launched www.covidopenforum.com, where posts range from the benign — “How do you fill your extra time in quarantine?”— to detailed descriptions of suffering with the virus.
Vohra’s father-in-law, who has fully recovered along with the rest of their family in India, wrote a 400-word post telling their story on the new forum — from how he came in contact with the virus to his brief stay in the hospital to the medication he took in his recovery period.
On the site, users can post discussions or pose questions in three categories: Health Management, Recovery Experiences, and Coping and Mental Health.
Verma, who focuses on the site’s design and user experience, said the three categories dovetail into one another as a way of creating a collective experience.
The Health Management category largely hosts questions on spread and contact, and most posts are from people who have not been diagnosed with COVID-19. Vohra and Verma said they decided not to include medical advice on the site, opting for anecdotal evidence instead.
The Recovery Experiences category is meant for those who currently have the virus. Vorha said the forum shows the reader that someone out there knows what they’re going through and provides reassurance.
The category on Coping and Mental Health focuses on the anxieties that arise both from having COVID-19 and from being left unemployed or financially insecure due to the pandemic.
The most viewed category to date is Recovery Experiences, according to the website.
“I think that that’s because when people are in a crisis state of mind, they’re looking for the positive stories of recovery,” Verma said. “It gives you a feeling of hope.”
Verma said the forum has seen posts from at least five countries: India, the United States, Canada, the United Kingdom, and the United Arab Emirates.
Anubhav Roy, 33, an MBA student at the University of Oxford in the UK, said he started using the forum as a resource after he experienced a COVID scare.
“It adds that human element to the conversation,” Roy said. “It gives you comfort, seeing these are real families going through the same things.”
Roy was finishing his last term at the university when Europe was being hit hard by COVID-19, and he said he used the forum to reassure fellow students and himself.
“A lot of people were looking for answers, personal experiences,” Roy said.
Users on the forum can choose to be anonymous, Verma said, potentially making the site vulnerable to the same pitfalls as most social media.
Armchair scientists have used social media to spread plenty of medical misinformation regarding COVID-19. Vohra and Verma both hope the forum’s focus on personal anecdotes rather than concrete medical advice will take away from its ability to misinform.
“That’s a risk the user is taking,” Verma said. “But it’s the same with any Facebook post or Reddit post.”
Roy, who checks the forum regularly, sees why misinformation might be an issue in the future.
“With its current form, I’m not too worried about misinformation,” Roy said. “But we’re seeing a surge of cases [in the UK] again, and people want to know more about COVID.”
“I think more people will come on the forum, and we’ll probably see conflicting opinions and information then.”
Verma has taken measures to prevent posters from polluting the forum, filtering out swear words, racist language and words like, “hoax,” “fraud,” “propaganda,” and “fake news.”
Vohra said the site has seen a decrease in posts since August, but she’s hoping it ticks back up soon.
“Our ultimate idea for this is in the future— if there are enough stories, enough archived material— is that it can be used for further research,” Vohra said.
Armand Manoukian can be reached at firstname.lastname@example.org.