Two years ago, I’d never heard of triple-negative breast cancer (TNBC). Now, it’s part of my medical history, my Google search history, and—my personal story.
In late September 2020, I sat in a large exam room, wearing a dark pink gown for the sixth time that month. My husband stood beside me. The medical transcriber typed away in the corner. The nurse navigator leaned against the wall holding an overflowing folder of information. And my surgical oncologist, who sat beside me, wrote “triple-negative breast cancer” across the top of a breast cancer basics printout.
I remember thinking, “She’s going to write down all the different types of breast cancer and educate me about them.”
But she didn’t write down any other types.
My mind went back to a day just two weeks earlier when a friend told me the story of her sister-in-law, who was also diagnosed with TNBC. “You know, the really bad kind,” my friend said. I’d nodded as if I understood, but I didn’t know there was a “really bad kind” (wasn’t all cancer bad?).
Panic and denial flooded my brain as I recalled this story and connected it to the handwritten words in front of me. In that space of seconds—which felt like hours—my oncologist waited quietly, meeting my eyes when it finally clicked.
This was my story now.
Why Storytelling Matters to Health Tech
When you have an important message to share with your audience, delivery is key—and storytelling is one of the most effective vehicles for transmission. Here, we’ll look at what happens when health data is delivered through a story.
1. Stories transform data.
On its own, health data isn’t usually a riveting read. But when you hear it embodied in a story, something happens. Numbers become people you know. A symptom raises a red flag. Suddenly the information is compelling (cue a 3 a.m. health portal email to your doctor).
When health data—be it anecdotal or scientific—becomes a real-life, real-time story, it changes everything. And on today’s health tech platforms, the lines between story, technology, and data are crossing all the time.
Derek McCracken, a lecturer for Columbia University’s Program in Narrative Medicine, is keenly interested in this intersection, which ultimately starts with facts. And as any storyteller knows—from journalists to copywriters to medical transcribers—the facts matter.
“In this dual pandemic/infodemic, fact-checking has taken on a whole new meaning,” says McCracken. “If we consider data to be raw, collected facts, then we may assume that the health information we’re gathering and receiving is good information: valid data that is organized and presented in a relatable context to make it useful.”
With tech tools at nearly everyone’s fingertips, we can all gather raw data. We can collect facts and find an abundance of health information, not all of it good (I certainly did my share of googling my diagnosis—against doctor’s orders).
But how do we know it’s valid without expertise or experience to interpret it? And what makes it useful?
Making meaningful connections through story
“Usefulness is subjective, and that’s why story is imperative to clear health communication—within or without health tech platforms,” says McCracken. “Story transcends technology.”
My friend and I would have never discussed breast cancer until it was a potential diagnosis, and her sister-in-law’s TNBC story would have been irrelevant until I saw those words in the exam room. This entire information exchange happened outside of health tech platforms.
But in an era when telehealth has become a primary mode of delivery, many newly diagnosed individuals (and their caregivers too) have turned to health tech for community, resources, and support. In these platforms, they find stories that humanize the data they’ve been given and access to resources for the journey ahead.
When health information has meaning in real-life, in real-time, it becomes incredibly valuable—whether it’s in a health tech app, written by hand on a printout, or shared in conversation. Through stories, data connects to the user/patient in a relevant and personal way.
2. Stories change behavior.
This personal connection is where stories get their power, and that power is often what moves the listener to action. Eleonora Teplinsky, MD, has seen this dynamic play out in new ways since starting her podcast, INTERLUDE: Women’s Cancer Stories.
“I’ve been overwhelmed by feedback that I get from women who make the conscious decision to advocate for themselves after listening to a podcast episode,” says Teplinsky, who’s the Head of Breast Medical Oncology at Valley-Mount Sinai Comprehensive Cancer Care in Paramus, NJ, and a Clinical Assistant Professor of Medicine at Icahn School of Medicine at Mount Sinai.
“In many cases, it’s a decision to get screened for cancer—through a mammogram, a colonoscopy, skin cancer check, or Pap smear,” Teplinsky says. “In other cases, it’s a woman who decides to go for a second opinion, to ask her oncologist about whether a medication is going to be right for her, or to speak up about side effects.” She’s even heard from women who decide to make healthy lifestyle changes.
These shared stories from peers motivate many patients to change behaviors. But data is equally important in changing behavior, and it opens a pathway for provider-patient communication.
How data + story creates discussion points
Daivat Dholakia, VP of Operations at the health software company Essenvia, believes this interface between patients, providers, and data is connected by one thing: stories.
“Storytelling brings people together and connects them to each other and to information without overwhelming them with abstract data,” says Dholakia. “Because stories are engaging, we become receptive to the important health information they contain, which can then help people change behaviors to better prevent a particular disease or health problem.”
Just as data + story makes patients more receptive to their provider’s recommendations, the pair also helps providers understand what recommendations to make.
“A doctor cannot always know the details of patients’ lives: what’s important to them or what motivates them,” says Katie Wilkinson, Head of Content and Community at Paloma Health, a health tech company focused exclusively on testing and treating hypothyroidism and Hashimoto’s.
That’s why Paloma Health created the Paloma app, which provides a data-driven tool for patients to manage their chronic thyroid condition.
“Every time you log in to the app, you’re encouraged to track your daily symptoms. You can share this info with your doctor to give more insight into what goes on between your doctor visits,” she explains. This also helps the patient become an active member of their care team: working more collaboratively with their provider, asking more questions, and getting more involved in co-creating their treatment plan.
“When a patient is clear on their condition, goals, expectations, and needs, it becomes easier to take responsibility for daily self-management,” Wilkinson says.
3. Stories spark movements.
Even before the pandemic, limited face-to-face time with doctors—and access to an abundance of data—drove patients online to get health information and guidance. So it’s critical for health care providers and health systems to be present in that space—to meet patients where they are, says Dr. Teplinsky.
One of those spaces is social media, a place where data and stories constantly intersect—and where influencers are not always medical professionals.
“We know that approximately 72 percent of the US population engages in at least one type of social media, and the 2018 Health Information National Trends Survey found that 70 percent of US adults have accessed health information online, with cancer being one of the most frequently searched health terms,” she says.
“The challenge that we are faced with now is combating misinformation, which is very prevalent online. And it can be hard to distinguish factual and evidence-based information from misinformation.”
While this challenge is significant, there’s also tremendous opportunity in it. “Social media and digital platforms have incredible power to affect health outcomes,” says Dr. Teplinsky. And this power is clearly embodied in the #feelitonthefirst movement—which started with a story.
A story turned lifesaving, global movement
Nalie Agustin first shared her health story on YouTube after being diagnosed with breast cancer in her early twenties. As she expanded her online presence, she inspired young adults (men can get breast cancer too!) to do a breast self-exam on the first day of every month. That’s how the #feelitonthefirst movement started, and it continues, even though she’s no longer here (she died of breast cancer on March 22, 2022).
Agustin was relentless in her advocacy for early detection because hard data and anecdotal evidence show that simple self-checks are instrumental in preventing advanced-stage discovery when treatments are limited and the disease is incurable/terminal. She wanted her story to go far and wide, so other young women did not have a story like hers.
And this is also her legacy, embedded in her Instagram account with more than 120K followers; in countless blogs, articles, TED talks, podcasts, and other public speaking appearances; and in her best-selling memoir The Diary of Nalie.
4. Stories drive change.
What happens to a story when it goes viral like Agustin’s? It creates an opportunity to take the data even further, raising awareness, driving decisions, changing behaviors, sparking action, and ultimately, changing the narrative—which has the power to save lives.
What’s the difference between story and narrative? McCracken defines narrative as a particular kind of story—an overarching account we give about ourselves and others that helps us affirm and keep track of who we are, what happens, where we are, why we feel a certain way, when events occur, and how we respond.
“And narratives are powerful because they’re memorable and malleable,” he says.
- Nalie Agustin changed the narrative of early (breast cancer) detection through her story and lasting legacy.
- Dr. Teplinsky is changing the narrative of health advocacy through her podcast and social media presence.
- Companies like Paloma Health are changing the narrative of chronic care management by engaging patients through health tech platforms tailored to their data and stories.
The intersection of story, data, and technology creates a narrative bigger than any statistic, diagnosis, or health decision. And these are the stories that will go on.
Bottom line? If you’re in the business of stories, especially healthcare tech stories, remember the delivery. Connect with your reader in relatable ways, not with jargon. Humanize the data so they can picture themselves or a friend instead of a faceless stat. Make it relevant, and make it meaningful. Through compelling storytelling, you have the power…
- …to share useful information,
- …to generate critical awareness,
- …to inspire meaningful action, and
- …to drive change.
That’s the power of story, and we all have it. Use it wisely and well to serve your audience—and you may just save a life.
Author’s Note: After my slow-motion diagnosis appointment in September 2020, everything moved in fast forward. But after intensive chemotherapy, a double mastectomy, 30+ radiation treatments, and much, much more—I’m here, writing this story. Cancer-free. Healing. And writing and editing more stories for Contently clients—most of them in the healthcare space.