Everyone has a story to tell.
“Experts by Experience” lets patients and their caregivers tell their stories, in their own voice.
As Kanaaz Pereira, communications associate for public affairs at Mayo Clinic, puts it in her article introducing the series:
A main purpose of the “Experts by Experience” series is to bring the patient perspective to people who can learn from these experiences—health care providers, and those in communications and administration.
“Experts by Experience” will feature articles by members of Inspire and Mayo Clinic Connect—online support communities for patients and caregivers connecting more than 1 million people.
The kindness of strangers
In “Kindness at the margin for caregivers,” the first installment, Renata K. Louwers reminds health care professionals of the need for compassion when caregivers bring their loved ones to the emergency room.
In one striking instance she describes bringing her husband, who was then suffering from stage IV bladder cancer, to a facility where he was forced to wait on a stretcher in a hallway. With no place to sit, Louwers leaned against a wall—until she was scolded by a staffer.
In a second experience:
Conversely, in another emergency room visit, we arrived late at night with the worry that he had developed a blood clot in his leg. A nurse could immediately see how tired I was. He brought me a pillow and said, “There’s a waiting room down the hall that’s empty this late. You can take a nap there and I’ll come get you when the doctor comes to talk to your husband.”
It was as if I’d been given a free upgrade to first class.
Voices clamoring to be heard
“Since the launch, we’ve had many requests from people wanting to contribute,” says Lee Aase, director of Mayo Clinic Social Media Network. “With their level of interest, the biggest challenge will be choosing from among the submissions.”
Shaping the stories isn’t difficult.
“We want the voice of the author to be authentic, so that the story truly is firsthand,” Aase says. “Every author has a wealth of experience that they could share. We work with them to find one aspect that they would like to focus on, the one thing they really want others to know about their reality.”
The stories will be evenly balanced between Mayo Clinic patients, primarily through Mayo Clinic Connect, and those who have been patients elsewhere, via Inspire.com.
In the long term, Aase hopes that sharing these firsthand accounts will educate and inform those who don’t live with these conditions. In addition, he hopes health care practitioners and communicators worldwide will learn more about the patient perspective and discover opportunities for improving the patient experience.
“For us,” Aase says, “success will be hearing that people have broadened their understanding of what it is like to live with chronic illness, that health care teams use the stories as case studies for improving health care delivery, and most of all, that the recognition that patient networks—online and offline—have the power to not only support, but to inform and transform.”