Purple peaks on a virtual graph track Patricia Ganz’s daily exercise levels, rising and falling with the steps her iPhone sensor records each day.
But Ganz’s new app isn’t just a pedometer; it allows female Apple users across the United States to log their daily mood swings and sleep habits as part of a mobile-driven research study on the effects of breast cancer treatment.
Ganz, an oncologist at the UCLA School of Medicine, helped turn the app into reality.
Since the app’s March 9 release by Apple Inc., about 2,100 users have downloadedShare the Journey: Mind, Body and Wellness after Breast Cancer. Sage Bionetworks, a Seattle-based nonprofit organization, originally developedShare the Journeyas a Web-based program with a grant from the Robert Wood Johnson Foundation.
To design the app, Sage employees consulted renowned cancer experts, including Ganz. She adapted questionnaires from her clinical work to allow patients a method of documenting day-to-day health fluctuations with the touch of a finger. She said she thinks the app’s method of direct outreach is novel. Her past research has shown that patients are the best reporters of their own health.
“We can push it out to women all over the country who can volunteer to participate in research. We’re interested in getting as broad a picture as we can,” she said.
Ganz has a history of serving the breast cancer community, whether serving on the advisory boards of local charities or caring for families affected by cancer.
“I think it’s a real privilege to take care of patients and help them if they’re with serious illness. I enjoy taking care of the whole person,” she said.
The free, open-source app is open to anyone age 18 to 80 years old with or without a history of breast cancer. The study is open to healthy female participants so researchers can investigate which post-cancer treatment problems, such as insomnia and depression, are attributable to cancer, and which ones are due to other factors, Ganz said.
When Ganz recently announced Share the Journey at a local committee meeting for Susan G. Komen conference organizers, Mary Nooter Roberts was listening.
Five years ago, Roberts – a professor at the UCLA world arts and cultures/dance department since 2001 – was diagnosed with stage 4 metastatic breast cancer. Last December, Roberts learned the cancer had reappeared in her liver and promptly began a new treatment of cell inhibitor drugs. She said she may download the app in the future to share her post-chemotherapy experience.
“Whenever you are able to see and share experiences with other patients, it helps to relativize what you’re going through,” Roberts said. “It makes (the healing process) less unusual and less fearful.”
Every day, patients using the app rank five conditions on a scale: fatigue, mood, sleeping habits, cognitive changes and exercise. They can also log special activities such as piano practice that could make logging more personal, said Andrew Trister, senior physician at Sage.
Trister said he hopes these trials will allow patients to make insights on their daily progress when presented with health information. He recalled recent feedback from a breast cancer survivor and app user in Pennsylvania. Share the Journey,she said, gave her quantitative evidence that yoga, a practice recommended by her doctor, was improving her mood, energy level and outlook on life the days she attended class.
“I learn from all of my patients that this is one chance to help them help themselves,” Trister said. “They’re not alone in this process.”
In the future, he said Sage plans to publish and archive the app’s collected data. The company is also working to translateShare the Journeyinto multiple languages, including Spanish, and host a webinar in the next month to share study insights with participants.
Roberts said she thinks Ganz’s work with Share the Journey is remarkable.
“It will allow for doctors, therapists and other caregivers to address a patient’s needs in the most personalized way. So it’s like you develop a signature,” she said. “You’re not just a statistic.”