How to Find Patient Stories on Social Media

 

On a cool Texas afternoon in mid-April, Anna Kuchment dashed off an email she figured would never get a response.

Kuchment, a science reporter for The Dallas Morning News, was writing a piece about convalescent plasma—a centuries-old treatment that can speed an ailing person’s recovery by infusing their blood with plasma from someone who’s already recovered from the same disease. Preliminary trials of the blood-based therapy, which relies on infection-fighting antibodies produced by the immune system, indicate that it appears to be effective against some severe cases of COVID-19.

To add depth and heart to her story, Kuchment wanted to feature a patient who’d undergone the procedure and could speak to its benefits. Without that added dimension, “you don’t really see how this touches people’s lives,” she says. But Kuchment’s typical go-to for patient sources—local hospitals, where staff were understandably overwhelmed—had so far yielded only dead ends.

So Kuchment did something she’d never tried before: She turned to social media. A quick Facebook search for “convalescent plasma” and “Dallas” turned up several posts seeking plasma for a local man with COVID-19 who’d been on a ventilator for nearly a month.

Kuchment, who didn’t fit the bill for a donor, wasn’t exactly the target audience for the posts. But she emailed the people behind the calls all the same, expressing her condolences, explaining that she was a journalist, and politely asking if she could be put in touch with the family of the patient described.

It was a long shot. “I wasn’t really expecting to hear back,” Kuchment says. But almost immediately, a message pinged into her inbox. Within hours, she was in contact with the patient’s wife, Jackie Hoffman, who had good news: Her husband, Michael, had received plasma from a donor just days before. It was too early to say for sure, but the treatment appeared to be working—and by week’s end, the couple had agreed to share their story.

Kuchment’s article, published on April 25, ended up featuring not just Michael (who is now recovering at home), but also his doctor, Gary Weinstein, and his donor, Leonard Seiple. Featuring the perspectives of all three helped build a complete story—one rich with science, history, and human emotion. “It was all because of Facebook,” Kuchment says.

Not all health reporting goes quite this smoothly. But Kuchment’s first foray into Facebook sourcing represents what appears to be a growing trend in science writing. Thanks to social media platforms, it’s become easier than ever for journalists to connect with sources and amplify voices from tough-to-access, vulnerable, and marginalized communities. But venturing into this virtual territory also raises some complex ethical quandaries about the spaces reporters should and shouldn’t invite themselves into—and how to balance timeliness and accuracy with sensitivity and compassion.

Leveraging social media for patient stories isn’t something to be taken lightly, says Eli Chen, a science and environment reporter for St. Louis Public Radio. The key, she says, is to remain conscious of the value of the information that’s being communicated—to both the reporter and the source, who’s inevitably taking a risk in sharing their story.

“What I recommend is to just be human,” Chen says. “That’s how you should treat all of your sources anyway.”

 

Finding an In

An important part of health reporting includes finding narratives from patients who can make otherwise dry figures and statistics more approachable, says Priska Neely of Reveal, who has reported extensively on infant and maternal mortality. As she has written, Black women are three to four times more likely to die in childbirth than their white counterparts. “Without the stories of people who have actually experienced this,” she says, “those statistics are easy to look at through a blame lens” that puts Black mothers at fault.

Sometimes, those narratives come to journalists in the form of tips, allowing a reported story to be shaped around them. But in many others, reporters must do the legwork of identifying and interviewing patients and survivors themselves, starting only with the kernel of a topic. Taylor Knopf, who reports on health care for North Carolina Health News, often starts her search by querying her other sources, especially doctors or other local leaders who work with people with specific medical conditions. That avenue alone works about 90 percent of the time, Knopf says.

Patient advocacy groups or lawyers (such as those who specialize in malpractice or personal injury) can be a rich resource as well, Knopf adds. When in-person meetings are a possibility, Knopf has also had luck connecting with patients at conferences, rallies, walks, and other events that center on the condition she’s interested in.

Then there’s social media. Some journalists have found sources by digging through relevant hashtags and lists on Twitter, or scouring Reddit threads for vocal participants. But most of the reporters interviewed for this piece have had the best success with Facebook, especially when seeking sources with a local connection or an especially rare condition.

When pursuing a story about a group of nursing home workers struggling to cope with the unprecedented conditions brought on by the COVID-19 pandemic, Kaiser Health News reporter Anna Almendrala used Facebook to track down individuals linked to the Magnolia Rehabilitation & Nursing Center in California. She found the profile page of the Riverside County Department of Public Health, where a video clip of a press conference had attracted hundreds of comments, and she messaged dozens of people who appeared to have inside knowledge of the situation. Most never responded, but Almendrala eventually found several individuals willing to go on record, including a few certified nurse assistants and a family member of a nursing home resident.

Boston-based science journalist Elizabeth Preston employed a similar strategy when diving into the world of fecal transplants. After punching a few keywords into Facebook’s search bar, she happened upon a few groups that didn’t restrict membership. She joined and quickly introduced herself as a journalist looking for people who may want to share their experience. She also noted that if anyone considered her request inappropriate, they should let her know.

This kind of transparent, respectful approach is key to successfully navigating social media as a journalist—especially when covering sensitive topics like medical conditions, Preston says. “It can feel intrusive if a journalist shows up and [gives the impression that they’re] trying to mine your group for personal anecdotes. … I was careful to be polite and upfront.”

Some groups, like several of the ones Preston found, are fairly lax about their membership and are intended to be virtual portals for discussion. Others, though, are more exclusive, and reporters should tread with caution. Both Preston and Sharon Begley, who reports for STAT, recommend steering clear of groups that explicitly bill themselves as support groups for patients or individuals with specific conditions. Many of these groups are also closed and require moderator approval to join—likely in part to keep their members safe. If all other avenues seem blocked, one possible workaround might involve sending a message to the admins and explaining the situation. Some moderators may be open to letting journalists join and post a message, or may even write something on their behalf. Even if indirect, a moderator’s endorsement can make all the difference to group members who don’t have much experience with the press, or don’t otherwise have a way to vet who’s asking them for personal information.

 

Respecting Boundaries

Though what’s on social media is often public, that doesn’t mean it’s always fair game to publish. Almendrala says quoting material from someone’s account—including, for instance, embedding a tweet—shouldn’t happen “without touching base with that person first.”

It’s common to encounter patients who are eager to engage on an informal basis, by adding comments or replies to posts from journalists, but wary of going on record. “In general, people are very ready to answer questions on the main feed [in a Facebook group], where everyone is chatting and sharing stories,” Preston says. “But if you follow up and ask, ‘Can I call you?’ sometimes people don’t respond, or get uncomfortable.”

If the answer to a request for comment is a flat-out no, or radio silence, move on, says Almendrala, who sometimes ends up sending hundreds of messages via various social media platforms before identifying a responsive source. But if someone expresses hesitation or asks questions, rather than simply saying no, it’s fine to respectfully ask whether you can address their concerns by providing more information. “I try to reassure [these patients] that I will be sure to quote them accurately and do fact-checking,” Preston says. Oftentimes, “people come around when I explain exactly what the process is.”

It’s important to remember that when seeking out patients on social media, journalists are venturing onto their sources’ turf—not the other way around. That requires using a “lighter touch,” perhaps more so than usual, Almendrala says.

When in doubt, consider how you’d feel if someone screenshotted the messages you were sending potential sources, Neely says. “Would it be embarrassing? Would you feel terrible? Just remember that this is a person’s story.”

If a deadline isn’t looming, take the time to get to know your source and build up a rapport—give them a concrete reason to trust a stranger with sensitive information. There’s “power in building relationships over time,” Neely says.

Begley and others also point out that it’s good practice to verify that interviewees are okay with having their full names published, especially if the source doesn’t have much experience talking to reporters. “I don’t promise to show [copy],” Knopf says. But she often offers to review certain parts of her story with her sources before sending off the final piece. “I’d be leery of putting my own personal medical history out there, and I take that into account.”

Sensitivity is also crucial during fact-checking—especially if medical records are involved. Requesting these types of documents isn’t always necessary, Preston notes, especially if an individual is just recounting their personal experience with a condition. But in other cases, such as those in which patients are making accusations against hospitals or nursing homes, claims need to be cross-checked with some sort of official record. Here, Neely tries to be as transparent as possible. “Just explain why,” she says. Having documentation simply makes it easier for a reporter to write a clear, accurate story.

 

Keeping Lines of Communication Open

Once you’ve established something of a beat, “put yourself out there” on social media, and invite patients with stories to find you, Neely says. “Have a pinned tweet that says, ‘I’m looking for stories about [some topic], here’s my email, my DMs are open.’ You never know what someone may tell you.”

And for many health journalists, the relationships seeded while reporting stories extend beyond the publication date. After wrapping up a recent COVID-19 story, Chen of St. Louis Public Radio stayed in touch with a source whose mother had tested positive for the virus. “I wanted to know if she was doing alright,” she says. “Journalists are often seen as extractors … who file a story one day and then just move on to the next thing. I really don’t want to treat people’s information that way.”

Jackie Hoffman, the wife of the COVID-19 patient profiled in the piece in The Dallas Morning News, appreciated a few things about Kuchment’s approach. Kuchment didn’t dog her with a deadline, especially given her husband’s fragile condition. She liked that Kuchment said the focus of the story would be on the science of convalescent plasma, rather than a lens into Michael’s personal life; it was also comforting, she says, to know that Michael’s doctor agreed to be interviewed for the piece.

Through it all, Kuchment was kind and cognizant of the uncertainty of the situation, Hoffman says. “That’s the most important part—to respect that, for whoever you’re talking to, [getting interviewed by a reporter] is the last thing on someone’s mind when they’re going through a family crisis.”

 

 

Katherine J. Wu is a science journalist and Story Collider senior producer who has written for Smithsonian, National Geographic, Popular Science, Undark, and more. She is a TON early-career fellow sponsored by the Burroughs Wellcome Fund and is currently a reporting fellow at The New York Times’ science desk. She holds a PhD in microbiology from Harvard University. Follow her on Twitter @KatherineJWu.