Tips for finding ‘real’ people for your stories Date: 12/05/22
By Barbara Mantel
Editors often want people with lived experience in stories. The question is, where to find them?
Sometimes, the communications team at an advocacy group or a medical society can help, or a doctor you have interviewed can suggest a patient.
There are several advantages to this approach. The organization or health care provider will have vetted the details of that person’s experience, and the person probably won’t be shy about sharing them. In addition, while the organization is doing the legwork to find that “real” person to interview, you can turn to other reporting for the story.
But there are downsides. It can take time for communication folks to respond. The people they suggest may be overexposed or they may be advocates, which may not be what you want. They may not be diverse. And if the patient comes to you through a health care provider you have interviewed, chances are the patient is going to be from the same city or region. That may not be ideal for a national story, said independent journalist Sony Collins.
Collins is one of four freelancers I interviewed for tips on how to use social media to find “real” people for stories. Here are their thoughts, divided by social media platforms.
Freelancer Erin Boyle has found patients by using Instagram and typing in a disease or condition into the search toolbar. “Sometimes patients are building a brand almost around their illness identity,” said Boyle, and, as a result, they are likely to be receptive to an inquiry from a reporter. “It's also a lot easier finding diverse sources, patients who might not be the ones necessarily promoted by medical societies or other institutions,” she said. Social media is the great equalizer, at least in theory, and “anyone can start a social media page around their illness and have people read it.”
Sometimes Boyle will send a private message to the person, but some people don’t often check their Instagram messages, or they may not respond to people they don’t know. Boyle almost always digs deeper to find an email. “At the top of their profile, it'll have their name and usually what's called their Linktree link. That's the link that will go to either a Linktree that has a list of all of their offerings or it will go straight to their website or their podcast or whatever it is they're doing,” Boyle said.
Boyle keeps the initial email short and sweet. “I immediately introduce myself. ‘Hi, my name is Erin Boyle. I am a health journalist, and I'm writing a story on this topic for this outlet, and I need an interview with a patient with your experience. Are you open and willing to talk to me?’” She then notes her deadline and lists several ways to get back in touch with her. In the subject line, Boyle usually writes, “Need interview for Healthline” or whatever the outlet is.
Independent journalist Sonya Collins said she is comfortable vetting people through Instagram. “When you do a hashtag search on Instagram, obviously you're going to comb through a ton of photos, and you start to read the captions and find little tidbits of people's stories,” Collins said. “So that way you're already vetting to see if their story is legit. They’re not posting in response to a request that I’ve made.”
Boyle said she also finds patient groups on Instagram. “For instance, colon cancer has a patient-based group that you can find through Instagram, and if you follow them, you start to see the patients they share,” said Boyle. “And if you reach out to the group, they can connect you to those patients.”
Collins frequently uses Facebook to find patients with a certain condition or enrolled in a clinical trial for a particular disease. “I look for groups on Facebook, and if it's a relatively common disease, like breast cancer, you're going to find dozens of groups.”
In this example, Collins would narrow it down to groups run by women living with breast cancer and mostly avoid big cancer organizations who are more likely to help with finding experts. She tries to join groups that have relatively large number of people who post frequently.
Collins cautioned reporters to be respectful of each Facebook group’s rules. “Sometimes, as soon as you ask to join the group, you'll see a little window pop up with rules that say, ‘Don't solicit anything.’ ‘If you're not a cancer survivor, if you're not living with cancer, don't say anything in this group or don't join.’ But even if they don't say something as explicit as that, I tend to assume that I'm not allowed to post something that says, ‘I'm looking for a lady with triple negative breast cancer to interview.’”
Instead, Collins finds the administrators or moderators of the group in the list of members, and she will direct message them. “I say, ‘I am Sonya, I just joined your group. I don't have breast cancer. I'm a journalist. I'm doing a story on this. And is it okay if I post in the group that I'd like to interview a woman in this particular circumstance? Or could you do the post for me?’ And I frame it that I'm looking for a woman who likes to tell her story as a way to help other women,” Collins said. She asks any interested people to direct message her a brief synopsis of their story.
To verify their story, Collins will then click on that person’s individual Facebook page. “And with cancer stories, for instance, you can see the telltale signs of this being a cancer survivor. You can see their pink ribbons on their profile pictures, and you can see hair loss and all those sorts of things.”
Freelance journalist Tara Haelle, AHCJ’s core topic leader on medical studies, uses Facebook to find groups and will also sometimes post a request on her own Facebook feed. “If someone replied who was a good friend of mine, I would not quote them because that would be unethical,” Haelle said. “If it is someone I know only casually through social media, I don’t see that as a conflict of interest,” she said. “But it is a judgment call each time. The more distant they are from me, the less concerned I am about that.”
Independent journalist Cassidy Chew has found people to interview by doing keyword searches that lead her to an individual, not a group, Facebook page. For example, Chew found a man with diabetes who had reversed the course of his disease through diet and exercise. “It can be kind of tricky to approach people on Facebook because they don’t know who you are,” said Chew. “As you would in an email, you use a professional voice and clearly explain who you are and what you are looking for.”
In the spring of 2022, a producer hired Chew to find him people to interview for a video series about health equity. For example, for two of the videos she was looking for LBGT youth who had challenges remaining at home and Black families affected by maternal mortality.
Chew ultimately turned to GoFundMe, where she found a group home for LGBT teens that was raising money. She also found an African-American man whose wife had died because of pregnancy-related complications in 2021, leaving him to raise seven children. Friends had set up a page to raise funds to help defray his living expenses.
“His first name and last name was listed and the city and state where they live,” said Chew. “So I did some research to see if there was such a person in that city in Georgia.” Chew said it is important, before reaching out, to do complimentary reconnaissance, through Google searches and perhaps court records and news reports, to verify that people are likely to be who they say they are.
Collins said she has found Linkedin to be useful when looking for people who are living with a rare disease. Parents will often launch a foundation to raise money, or they will become speakers. Linkedin is a good place to find someone with that kind of professional endeavor, she said. “And, of course, if they are on the speaker circuit then they’re articulate about it, which is good for your story.”
Collins will ask the person to join her Linkedin network and in the accompanying message explain what she’s looking for. She suggested setting up your Linkedin account so that whenever someone messages you through the platform, you receive an email alert.
“My advice for Twitter is literally the exact same as with Instagram,” said Collins. She does a hashtag search, she follows people who are movers and shakers talking about the condition or who have the condition, and she follows up with a direct message or with an email if she can find an email address.
Haelle used Twitter to find children who owned a certain pet for a story about how the animals were spreading salmonella. “I did a search on Twitter to find all the people who had posted about having an African dwarf frog,” she said. “And then I reached out to them and I asked, ‘Do you by chance have a kid?’ Honestly, I don't know how else I would have found children like that.” In this case, she didn’t use a hashtag because it was such a strange topic. Instead, she put the animal’s name in quotes.
When she sends the person she has found a private message, Haelle, like Boyle and Chew, keeps it short and direct. She also includes links to a few of her stories so they can see that she is a legitimate journalist. Once she gets a response, she tries to vet the person, but it is not always easy. She will certainly check out their other tweets.
“It’s a gut thing,” Haelle said. “If they tweet about ordinary stuff like, ‘The basketball game last night was great’ or what they had for breakfast and then interspersed within that over time is, ‘Here’s the latest from the radiologist’ or ‘I went to the doctor today,’ then that seems pretty legit.” And once she is conducting the interview, Haelle may ask for medical records.
With all the turmoil at Twitter since billionaire Elon Musk bought the social media platform, Haelle says she is not certain how much she will be using it in the future.