Effective patient care needs more than just statistics and medicine. Conditions are more complex than textbook treatment plans — they’re subjective human experiences.
“For decades, numbers drove the treatment of diseases like asthma, heart disease, diabetes, and arthritis … Doctors, of course, are still monitoring such numbers,” wrote Laura Landro in The Wall Street Journal. “But now health-care providers are also adding a whole different, move subjective measure — how people feel about their condition and overall well-being.”
Patient-driven content has the power to make healthcare better, and the following cases explain why.
Teenager Carly Fleischmann has had autism her whole life. Despite intensive therapy, she was unable to communicate until 2006, when a computer changed her life.
“All of a sudden, these words started to pour out of her, and it was an exciting moment because we didn’t realize she had all these words,” speech pathologist Barbara Nash told ABC News.
Six years later, Carly has become the previously unheard voice of severe autism. Through her website and Facebook page, she answers patient questions. She’s even co-written a book to help share her story.
“Last year a story about my life was shown on ABC News, CNN, and CTV here in Canada,” Carly wrote on her website. “After my story was played I kept on getting lots of emails from moms, dads, kids, and people from different countries asking me all sorts of questions about autism … I think what happens is that experts can’t give an explanation to certain questions. How can you explain something you have not lived or if you don’t know what it’s like to have it?”
Carly’s storytelling has helped make peoples’ lives better.
Health questions don’t always necessitate a visit to a doctor. But people still want to learn. Last February, a Pew Center study revealed that 80 percent of Internet users research health information online.
But what’s the best way to find trusted and personalized information? A website article can provide general direction, but individual cases are more complex. Even though there’s plenty of content out there, there is gap between medical information and patients, and social platforms like HealthTap are stepping in to help.
“HealthTap is an online medical community where anyone can ask any health question online or via a mobile app and quickly receive answers from top U.S. physicians across 100 specialties, for free,” wrote Leena Rao in a TechCrunch article.
Through HealthTap, people can create user profiles with their health histories, read one another’s questions, and receive multiple opinions on a topic.
For doctors and patients, the value proposition is mutual. Doctors have an opportunity to learn from patient experiences and fellow-doctors. Patients gain access to personalized content.
Peer-to-Peer Support Groups
Online patient support groups are invaluable for supplementing medical care.
“Peer-to-peer healthcare is a way for people to do what they have always done — lend a hand, lend an ear, lend advice — but at Internet speed and at Internet scale,” Susannah Fox wrote for the Pew Center at the Medicine 2.0 Congress held at Stanford last year.
Through private email lists and membership-based forums, patients can share personal stories from anywhere in the world.
“Just like peer to peer file sharing transformed the music industry by allowing people to share songs, peer-to-peer healthcare has the potential to transform the pursuit of health by allowing people to share what they know,” Fox said.
Listen to this story shared by Julie Keon, the mom of a seven-year-old with cerebral palsy. She was comforting her daughter in the waiting room at her local Children’s Hospital when she sensed someone staring from across the waiting room. She ignored them until she saw it was a mom, holding a baby.
“I knew immediately,” Julie writes, “that you were one of us… I should have recognized that shocked stare because I once had it, too…
As Julie left the waiting room, she passed the mom and they shared a smile, a spark of recognition. She wrote an essay about what she would tell that mom who is just starting on the path of caring for a child with cerebral palsy.
“If I could, I would tell you although you might not believe it right now, you will be okay…
Top image courtesy of Icons Jewelry/shutterstock