Two years in the past, I’d by no means heard of triple-negative breast most cancers (TNBC). Now, it’s a part of my medical historical past, my Google search historical past, and—my private story.
In late September 2020, I sat in a big examination room, carrying a darkish pink robe for the sixth time that month. My husband stood beside me. The medical transcriber typed away within the nook. The nurse navigator leaned towards the wall holding an overflowing folder of knowledge. And my surgical oncologist, who sat beside me, wrote “triple-negative breast most cancers” throughout the highest of a breast most cancers fundamentals printout.
I keep in mind pondering, “She’s going to put in writing down all of the various kinds of breast most cancers and educate me about them.”
However she didn’t write down another sorts.
My thoughts went again to a day simply two weeks earlier when a pal informed me the story of her sister-in-law, who was additionally recognized with TNBC. “You already know, the actually dangerous sort,” my pal mentioned. I’d nodded as if I understood, however I didn’t know there was a “actually dangerous sort” (wasn’t all most cancers dangerous?).
Panic and denial flooded my mind as I recalled this story and linked it to the handwritten phrases in entrance of me. In that house of seconds—which felt like hours—my oncologist waited quietly, assembly my eyes when it lastly clicked.
This was my story now.
Why Storytelling Issues to Well being Tech
When you may have an necessary message to share along with your viewers, supply is essential—and storytelling is among the only autos for transmission. Right here, we’ll take a look at what occurs when well being information is delivered via a narrative.
1. Tales rework information.
By itself, well being information isn’t often a riveting learn. However once you hear it embodied in a narrative, one thing occurs. Numbers grow to be folks you recognize. A symptom raises a pink flag. Out of the blue the knowledge is compelling (cue a 3 a.m. well being portal e mail to your physician).
When well being information—be it anecdotal or scientific—turns into a real-life, real-time story, it modifications every thing. And on right now’s well being tech platforms, the traces between story, expertise, and information are crossing on a regular basis.
Derek McCracken, a lecturer for Columbia College’s Program in Narrative Medication, is keenly on this intersection, which finally begins with info. And as any storyteller is aware of—from journalists to copywriters to medical transcribers—the info matter.
“On this twin pandemic/infodemic, fact-checking has taken on an entire new which means,” says McCracken. “If we think about information to be uncooked, collected info, then we could assume that the well being info we’re gathering and receiving is sweet info: legitimate information that’s organized and introduced in a relatable context to make it helpful.”
With tech instruments at practically everybody’s fingertips, we are able to all collect uncooked information. We will accumulate info and discover an abundance of well being info, not all of it good (I definitely did my share of googling my prognosis—towards physician’s orders).
However how do we all know it’s legitimate with out experience or expertise to interpret it? And what makes it helpful?
Making significant connections via story
“Usefulness is subjective, and that’s why story is crucial to clear well being communication—inside or with out well being tech platforms,” says McCracken. “Story transcends expertise.”
My pal and I’d have by no means mentioned breast most cancers till it was a possible prognosis, and her sister-in-law’s TNBC story would have been irrelevant till I noticed these phrases within the examination room. This complete info alternate occurred exterior of well being tech platforms.
However in an period when telehealth has grow to be a major mode of supply, many newly recognized people (and their caregivers too) have turned to well being tech for group, sources, and assist. In these platforms, they discover tales that humanize the information they’ve been given and entry to sources for the journey forward.
When well being info has which means in real-life, in real-time, it turns into extremely helpful—whether or not it’s in a well being tech app, written by hand on a printout, or shared in dialog. Via tales, information connects to the consumer/affected person in a related and private means.
2. Tales change conduct.
This private connection is the place tales get their energy, and that energy is commonly what strikes the listener to motion. Eleonora Teplinsky, MD, has seen this dynamic play out in new methods since beginning her podcast, INTERLUDE: Ladies’s Most cancers Tales.
“I’ve been overwhelmed by suggestions that I get from ladies who make the acutely aware choice to advocate for themselves after listening to a podcast episode,” says Teplinsky, who’s the Head of Breast Medical Oncology at Valley-Mount Sinai Complete Most cancers Care in Paramus, NJ, and a Medical Assistant Professor of Medication at Icahn College of Medication at Mount Sinai.
“In lots of instances, it’s a call to get screened for most cancers—via a mammogram, a colonoscopy, pores and skin most cancers examine, or Pap smear,” Teplinsky says. “In different instances, it’s a lady who decides to go for a second opinion, to ask her oncologist about whether or not a drugs goes to be proper for her, or to talk up about unwanted side effects.” She’s even heard from ladies who resolve to make wholesome life-style modifications.
These shared tales from friends encourage many sufferers to alter behaviors. However information is equally necessary in altering conduct, and it opens a pathway for provider-patient communication.
How information + story creates dialogue factors
Daivat Dholakia, VP of Operations on the well being software program firm Essenvia, believes this interface between sufferers, suppliers, and information is linked by one factor: tales.
“Storytelling brings folks collectively and connects them to one another and to info with out overwhelming them with summary information,” says Dholakia. “As a result of tales are partaking, we grow to be receptive to the necessary well being info they include, which might then assist folks change behaviors to higher forestall a specific illness or well being downside.”
Simply as information + story makes sufferers extra receptive to their supplier’s suggestions, the pair additionally helps suppliers perceive what suggestions to make.
“A physician can’t all the time know the small print of sufferers’ lives: what’s necessary to them or what motivates them,” says Katie Wilkinson, Head of Content material and Neighborhood at Paloma Well being, a well being tech firm centered completely on testing and treating hypothyroidism and Hashimoto’s.
That’s why Paloma Well being created the Paloma app, which gives a data-driven device for sufferers to handle their continual thyroid situation.
“Each time you log in to the app, you’re inspired to trace your every day signs. You possibly can share this information along with your physician to provide extra perception into what goes on between your physician visits,” she explains. This additionally helps the affected person grow to be an energetic member of their care staff: working extra collaboratively with their supplier, asking extra questions, and getting extra concerned in co-creating their remedy plan.
“When a affected person is obvious on their situation, objectives, expectations, and wishes, it turns into simpler to take accountability for every day self-management,” Wilkinson says.
3. Tales spark actions.
Even earlier than the pandemic, restricted face-to-face time with docs—and entry to an abundance of information—drove sufferers on-line to get well being info and steerage. So it’s important for well being care suppliers and well being programs to be current in that house—to fulfill sufferers the place they’re, says Dr. Teplinsky.
A kind of areas is social media, a spot the place information and tales always intersect—and the place influencers usually are not all the time medical professionals.
“We all know that roughly 72 p.c of the US inhabitants engages in at the very least one sort of social media, and the 2018 Well being Info Nationwide Developments Survey discovered that 70 p.c of US adults have accessed well being info on-line, with most cancers being probably the most continuously searched well being phrases,” she says.
“The problem that we’re confronted with now’s combating misinformation, which could be very prevalent on-line. And it may be arduous to tell apart factual and evidence-based info from misinformation.”
Whereas this problem is critical, there’s additionally super alternative in it. “Social media and digital platforms have unimaginable energy to have an effect on well being outcomes,” says Dr. Teplinsky. And this energy is clearly embodied within the #feelitonthefirst motion—which began with a narrative.
A narrative turned lifesaving, world motion
Nalie Agustin first shared her well being story on YouTube after being recognized with breast most cancers in her early twenties. As she expanded her on-line presence, she impressed younger adults (males can get breast most cancers too!) to do a breast self-exam on the primary day of each month. That’s how the #feelitonthefirst motion began, and it continues, although she’s not right here (she died of breast most cancers on March 22, 2022).
Agustin was relentless in her advocacy for early detection as a result of arduous information and anecdotal proof present that easy self-checks are instrumental in stopping advanced-stage discovery when remedies are restricted and the illness is incurable/terminal. She wished her story to go far and huge, so different younger ladies didn’t have a narrative like hers.
And that is additionally her legacy, embedded in her Instagram account with greater than 120K followers; in numerous blogs, articles, TED talks, podcasts, and different public talking appearances; and in her best-selling memoir The Diary of Nalie.
4. Tales drive change.
What occurs to a narrative when it goes viral like Agustin’s? It creates a chance to take the information even additional, elevating consciousness, driving selections, altering behaviors, sparking motion, and finally, altering the narrative—which has the facility to save lots of lives.
What’s the distinction between story and narrative? McCracken defines narrative as a specific type of story—an overarching account we give about ourselves and others that helps us affirm and hold observe of who we’re, what occurs, the place we’re, why we really feel a sure means, when occasions happen, and the way we reply.
“And narratives are highly effective as a result of they’re memorable and malleable,” he says.
- Nalie Agustin modified the narrative of early (breast most cancers) detection via her story and lasting legacy.
- Dr. Teplinsky is altering the narrative of well being advocacy via her podcast and social media presence.
- Firms like Paloma Well being are altering the narrative of continual care administration by partaking sufferers via well being tech platforms tailor-made to their information and tales.
The intersection of story, information, and expertise creates a story greater than any statistic, prognosis, or well being choice. And these are the tales that can go on.
The takeaway
Backside line? Should you’re within the enterprise of tales, particularly healthcare tech tales, keep in mind the supply. Join along with your reader in relatable methods, not with jargon. Humanize the information to allow them to image themselves or a pal as a substitute of a faceless stat. Make it related, and make it significant. Via compelling storytelling, you may have the facility…
- …to share helpful info,
- …to generate important consciousness,
- …to encourage significant motion, and
- …to drive change.
That’s the facility of story, and all of us have it. Use it properly and properly to serve your viewers—and you might simply save a life.
Creator’s Word: After my slow-motion prognosis appointment in September 2020, every thing moved in quick ahead. However after intensive chemotherapy, a double mastectomy, 30+ radiation remedies, and far, far more—I’m right here, penning this story. Most cancers-free. Therapeutic. And writing and enhancing extra tales for Contently shoppers—most of them within the healthcare house.
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