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 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 every other varieties.
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 recognize, the actually dangerous form,” my pal 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 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 have got an necessary message to share along with your viewers, supply is vital—and storytelling is without doubt one of the best automobiles for transmission. Right here, we’ll have a look at what occurs when well being knowledge is delivered by a narrative.
1. Tales remodel knowledge.
By itself, well being knowledge isn’t normally a riveting learn. However whenever you hear it embodied in a narrative, one thing occurs. Numbers grow to be folks you recognize. A symptom raises a crimson flag. Abruptly the knowledge is compelling (cue a 3 a.m. well being portal e mail to your physician).
When well being knowledge—be it anecdotal or scientific—turns into a real-life, real-time story, it adjustments all the pieces. And on at this time’s well being tech platforms, the strains between story, expertise, and knowledge 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 information. And as any storyteller is aware of—from journalists to copywriters to medical transcribers—the information matter.
“On this twin pandemic/infodemic, fact-checking has taken on a complete new that means,” says McCracken. “If we think about knowledge to be uncooked, collected information, then we might assume that the well being info we’re gathering and receiving is sweet info: legitimate knowledge that’s organized and offered in a relatable context to make it helpful.”
With tech instruments at almost everybody’s fingertips, we will all collect uncooked knowledge. We will gather information 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 by 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 might 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 whole info trade occurred exterior of well being tech platforms.
However in an period when telehealth has grow to be a main mode of supply, many newly recognized people (and their caregivers too) have turned to well being tech for group, 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 beneficial—whether or not it’s in a well being tech app, written by hand on a printout, or shared in dialog. By means of tales, knowledge connects to the consumer/affected person in a related and private means.
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 resolution 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 circumstances, it’s a call to get screened for most cancers—by a mammogram, a colonoscopy, pores and skin most cancers test, or Pap smear,” Teplinsky says. “In different circumstances, it’s a girl who decides to go for a second opinion, to ask her oncologist about whether or not a medicine 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 adjustments.
These shared tales from friends encourage many sufferers to alter behaviors. However knowledge is equally necessary in altering habits, and it opens a pathway for provider-patient communication.
How knowledge + story creates dialogue factors
Daivat Dholakia, VP of Operations on the well being software program firm Essenvia, believes this interface between sufferers, suppliers, and knowledge 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 knowledge,” says Dholakia. “As a result of tales are participating, we grow to be receptive to the necessary well being info they include, which might then assist folks change behaviors to higher stop a selected illness or well being downside.”
Simply as knowledge + story makes sufferers extra receptive to their supplier’s suggestions, the pair additionally helps suppliers perceive what suggestions to make.
“A physician can’t at all times know the main points of sufferers’ lives: what’s necessary to them or what motivates them,” says Katie Wilkinson, Head of Content material and Group at Paloma Well being, a well being tech firm targeted completely on testing and treating hypothyroidism and Hashimoto’s.
That’s why Paloma Well being created the Paloma app, which supplies a data-driven device 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 information along with your physician to present 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 group: working extra collaboratively with their supplier, asking extra questions, and getting extra concerned in co-creating their therapy plan.
“When a affected person is obvious on their situation, targets, expectations, and wishes, it turns into simpler to take duty 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 information—drove sufferers on-line to get well being info and steerage. So it’s essential 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 knowledge and tales continually intersect—and the place influencers will not be at all times medical professionals.
“We all know that roughly 72 p.c of the US inhabitants engages in not less than one kind of social media, and the 2018 Well being Data Nationwide Traits Survey discovered that 70 p.c of US adults have accessed well being info on-line, with most cancers being some of the 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 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, 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, though 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 knowledge and anecdotal proof present that straightforward self-checks are instrumental in stopping advanced-stage discovery when therapies are restricted and the illness is incurable/terminal. She needed 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 possibility to take the info even additional, elevating consciousness, driving selections, 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 selected sort of story—an overarching account we give about ourselves and others that helps us affirm and preserve 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 by her story and lasting legacy.
- Dr. Teplinsky is altering the narrative of well being advocacy by her podcast and social media presence.
- Firms like Paloma Well being are altering the narrative of persistent care administration by participating sufferers by well being tech platforms tailor-made to their knowledge and tales.
The intersection of story, knowledge, and expertise creates a story larger than any statistic, prognosis, or well being resolution. And these are the tales that can go on.
Backside line? When 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 info to allow them to image themselves or a pal as a substitute of a faceless stat. Make it related, and make it significant. By means of compelling storytelling, you have got the ability…
- …to share helpful info,
- …to generate essential consciousness,
- …to encourage significant motion, and
- …to drive change.
That’s the ability of story, and all of us have it. Use it properly and effectively to serve your viewers—and it’s possible you’ll simply save a life.
Writer’s Notice: After my slow-motion prognosis appointment in September 2020, all the pieces moved in quick ahead. However after intensive chemotherapy, a double mastectomy, 30+ radiation therapies, and far, rather 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.