The frantic, frightening, frazzled first weeks at St. Jude Children’s Research Hospital are still etched in the minds of Jason and Felicia Winkle six years later.
Overwhelmed with details about their son’s diagnosis of Ewing sarcoma, a rare bone and soft tissue tumor, the couple could barely track what day it was — much less their list of appointments and travel, housing and meal arrangements.
“In the first month, Micah’s appointments changed constantly, and we’d sign in to the St. Jude patient portal every couple of hours to keep up,” Jason recalls. “It’s also easy for parents to forget the names of doctors, nurses and other staff members because you meet so many, especially at the beginning.”
This keen insight fueled Jason — now co-chair of the St. Jude Patient Family Advisory Council — to provide inspiration and guidance as St. Jude created its new patient and family app, called Our St. Jude. Launched in late 2019, the award-winning mobile phone application offers patients and caregivers quick and easy access to personalized, real-time updates on clinical appointments, campus events and myriad other pivotal details.
Among other major features, the colorful Our St. Jude app lists each child’s care team and contact information and provides step-by-step walking directions to every campus building. With all this crucial information at families’ fingertips, St. Jude aims to lighten their load — whether their child is newly diagnosed or years out from active treatment, says Diane McGarry, administrative director of the Patient and Family Experience Office.
“The idea for the app came from our patients and families,” says McGarry, whose office spearheaded the project. “Why now? It’s staying relevant with where the world is going. It’s common to use your mobile device as a resource for planning your day, tracking the things you need to do and researching unknowns.
“We know that when our patients are new to St. Jude, they’re also likely new to a pediatric catastrophic disease, and that alone is enough,” she adds. “But many may also be new to the city of Memphis. At St. Jude we have so much information to give them. Our hope with the patient app is that we provide some peace of mind and a resource that helps them navigate many new and unknown things.”
Plugging in, logging on
The app’s creation — incorporating photos, maps and other splashy visual touches — spanned several years, McGarry explains. Along with the St. Jude Mobile Development Team, her office collaborated with patients and families at every step, interviewing them about their needs and ideas and asking them to test preliminary versions.
When users — who logged in more than 150,000 times in 2020 — open Our St. Jude, they first see what’s on their calendars, including appointments, social events and any travel or housing reservations. Up-to-the-minute alerts tell them how their schedule might have shifted, a common issue at a hospital as busy as St. Jude.
“Nothing else would have provided these kinds of notifications to our families,” McGarry explains.
“With COVID-19 constantly changing things, the app has been so useful. We’ve been able to send our families updates regarding changes to campus. Prior to the app, there wasn’t a great way to do that type of targeted communication.”
...we provide some peace of mind and a resource that helps them navigate many new and unknown things.
Meeting families’ needs
Several tweaks to app features are still planned, McGarry says, including offering it in Spanish and adding a personalized medication list and symptom tracker. She notes that those who are less tech savvy or don’t wish to use the app can still obtain all the same information in other formats.
But Micah Winkle is more than satisfied with what it offers him when he comes back to St. Jude for periodic follow-up scans. Five years after Micah’s treatment ended, a seemingly minor feature of the app — the daily cafeteria menu — is a big deal for the growing 15-year-old.
Small touches like this epitomize how well St. Jude shepherds its patients and families through an all-consuming experience, Jason says.
“It makes St. Jude that much more accessible to families,” he says. “Getting a cancer diagnosis is life-changing, but the way St. Jude meets the whole needs of the family is also life changing. The app is a game-changer in that sense.”
From Promise, Spring 2021