Nine years ago, Georgia Jones was diagnosed with adrenal cancer, a rare disease that strikes an estimated one in a million Americans.
Since then, she has been an active volunteer at the Helen F. Graham Cancer Center & Research Institute, where she leads an expressive art class for patients, survivors and caregivers. But she had never come in contact with someone who also had adrenal cancer until she was connected to Smart Patients, an online community that allows patients and loved ones to communicate with others who have shared their experiences.
“It’s a place where you can get together with other people who understand you,” Jones said. “Since I got involved with Smart Patients, I’ve been in touch with a dozen people with adrenal cancer.”
Smart Patients adds value to the programs that already support patients at the Graham Cancer Center, said Edmondo J. Robinson, M.D., MBA, FACP, chief transformation officer and senor vice president, consumerism, at Christiana Care. It’s a pilot program that ultimately could benefit other Christiana Care patients with various conditions and needs, such as stroke and multiple sclerosis.
“Transformation, through the lens of a health system, is figuring out how we can be just as good at the consumer side of patient care as we are with the clinical side of patient care,” Dr. Robinson said. “Imagine getting a cancer diagnosis. What if you had a connection with people across the country and could ask questions?”
Patients and caregivers report the system is user-friendly, “like Facebook for patients,” said Cindy Waddington, RN, MSN, AOCN, a clinical nurse specialist at the Graham Cancer Center.
“It connects patients and family members to others and takes people out of that sense of isolation, that feeling that they are the only ones,” Waddington said. “They can share anything from emotional concerns and fears to experiences, such as how to deal with fatigue, how to deal with having to ask other people to help you.”
Because Smart Patients is web-based, users have access 24/7. It’s convenient for patients and loved ones who may not be able to participate in local support groups or don’t feel comfortable talking about their concerns in person.
“They don’t even have to contribute to discussions,” she said. “You can just read.”
Jones typically accesses Smart Patients on her laptop at home in the early evening.
“It’s when I have quiet time,” she said.
She chats with patients, including several in California, about the latest experimental drugs to treat adrenal cancer.
“If my tumor ever came back, this information would be very helpful,” she said.
Jones also has been treated for thyroid cancer. Her care includes being on medications for life, and she chats with others about that experience.
“You go through a lot of ups and downs with thyroid cancer, with hair loss and weight going up and down,” she said. “We can relate to one another and console one another.”
As a volunteer at the Graham Cancer Center, she has become a champion on the ground for Smart Patients, helping to spread the word to patients in support groups and classes.
“It is the nicest group of people, a very helpful community,” she said. “At any time of the day or night, there is someone to communicate with. For people who are living with cancer, that is a great source of comfort.”