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, sporting 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 in opposition to 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 bear in mind considering, “She’s going to write down 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 buddy instructed me the story of her sister-in-law, who was additionally recognized with TNBC. “You understand, the actually dangerous form,” my buddy mentioned. I’d nodded as if I understood, however I didn’t know there was a “actually dangerous form” (wasn’t all most cancers dangerous?).
Panic and denial flooded my mind as I recalled this story and related 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 could have an essential message to share along with your viewers, supply is essential—and storytelling is likely one of the only automobiles 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 turn out to be individuals you already know. A symptom raises a pink flag. Abruptly the data 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 part. And on right this moment’s well being tech platforms, the strains 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 details. And as any storyteller is aware of—from journalists to copywriters to medical transcribers—the details matter.
“On this twin pandemic/infodemic, fact-checking has taken on a complete new that means,” says McCracken. “If we think about information to be uncooked, collected details, then we could assume that the well being info we’re gathering and receiving is nice 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 are able to gather details and discover an abundance of well being info, not all of it good (I actually did my share of googling my analysis—in opposition to 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 buddy and I might have by no means mentioned breast most cancers till it was a possible analysis, and her sister-in-law’s TNBC story would have been irrelevant till I noticed these phrases within the examination room. This whole info change occurred exterior of well being tech platforms.
However in an period when telehealth has turn out to be a major mode of supply, many newly recognized people (and their caregivers too) have turned to well being tech for neighborhood, assets, and help. In these platforms, they discover tales that humanize the info they’ve been given and entry to assets for the journey forward.
When well being info has that means in real-life, in real-time, it turns into extremely priceless—whether or not it’s in a well being tech app, written by hand on a printout, or shared in dialog. By way of tales, information connects to the person/affected person in a related and private manner.
2. Tales change habits.
This private connection is the place tales get their energy, and that energy is usually what strikes the listener to motion. Eleonora Teplinsky, MD, has seen this dynamic play out in new methods since beginning her podcast, INTERLUDE: Girls’s Most cancers Tales.
“I’ve been overwhelmed by suggestions that I get from ladies who make the 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 Scientific Assistant Professor of Medication at Icahn Faculty of Medication at Mount Sinai.
“In lots of instances, it’s a choice to get screened for most cancers—via a mammogram, a colonoscopy, pores and skin most cancers verify, or Pap smear,” Teplinsky says. “In different instances, it’s a girl 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 effects.” She’s even heard from ladies who determine to make wholesome life-style modifications.
These shared tales from friends inspire many sufferers to alter behaviors. However information is equally essential in altering habits, 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 related by one factor: tales.
“Storytelling brings individuals 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 participating, we turn out to be receptive to the essential well being info they comprise, which might then assist individuals change behaviors to raised stop 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 health care provider can not all the time know the main points of sufferers’ lives: what’s essential to them or what motivates them,” says Katie Wilkinson, Head of Content material and Group 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 supplies a data-driven instrument for sufferers to handle their persistent thyroid situation.
“Each time you log in to the app, you’re inspired to trace your each day signs. You may share this data along with your physician to present extra perception into what goes on between your physician visits,” she explains. This additionally helps the affected person turn out to be an lively 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 evident on their situation, objectives, expectations, and wishes, it turns into simpler to take accountability for each 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 knowledge—drove sufferers on-line to get well being info and steerage. So it’s vital for well being care suppliers and well being programs to be current in that house—to satisfy sufferers the place they’re, says Dr. Teplinsky.
A type of areas is social media, a spot the place information and tales continuously intersect—and the place influencers are usually not all the time medical professionals.
“We all know that roughly 72 p.c of the US inhabitants engages in at the least one sort of social media, and the 2018 Well being Info Nationwide Tendencies Survey discovered that 70 p.c of US adults have accessed well being info on-line, with most cancers being one of the vital steadily searched well being phrases,” she says.
“The problem that we’re confronted with now’s combating misinformation, which may be very prevalent on-line. And it may be exhausting to differentiate factual and evidence-based info from misinformation.”
Whereas this problem is important, there’s additionally large alternative in it. “Social media and digital platforms have unbelievable 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, international 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 exhausting information and anecdotal proof present that easy self-checks are instrumental in stopping advanced-stage discovery when therapies are restricted and the illness is incurable/terminal. She wished her story to go far and vast, 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 possibility to take the info even additional, elevating consciousness, driving choices, altering behaviors, sparking motion, and finally, altering the narrative—which has the ability to avoid wasting lives.
What’s the distinction between story and narrative? McCracken defines narrative as a specific sort of story—an overarching account we give about ourselves and others that helps us affirm and preserve monitor of who we’re, what occurs, the place we’re, why we really feel a sure manner, 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.
- Corporations like Paloma Well being are altering the narrative of persistent care administration by participating sufferers via well being tech platforms tailor-made to their information and tales.
The intersection of story, information, and expertise creates a story larger than any statistic, analysis, or well being choice. And these are the tales that can go on.
Backside line? For those who’re within the enterprise of tales, particularly healthcare tech tales, bear in mind the supply. Join along with your reader in relatable methods, not with jargon. Humanize the info to allow them to image themselves or a buddy as an alternative of a faceless stat. Make it related, and make it significant. By way of compelling storytelling, you could have the ability…
- …to share helpful info,
- …to generate vital consciousness,
- …to encourage significant motion, and
- …to drive change.
That’s the ability of story, and all of us have it. Use it correctly and effectively to serve your viewers—and chances are you’ll simply save a life.
Creator’s Observe: After my slow-motion analysis appointment in September 2020, every part moved in quick ahead. However after intensive chemotherapy, a double mastectomy, 30+ radiation therapies, and far, far more—I’m right here, penning this story. Most cancers-free. Therapeutic. And writing and enhancing extra tales for Contently purchasers—most of them within the healthcare house.