Cancer research groups, Apple and breast cancer organizations partner to accelerate survivorship research.
Big data just got bigger in the realm of cancer survivorship research.
During its spring forward event, Apple announced its new ResearchKit, which aims to speed scientific progress by empowering individual patients to shape research directions and outcomes by using a simple mobile app.
“Share the Journey: Mind, Body, and Wellness after Breast Cancer,” will offer survivors an opportunity to take part in cancer research by tracking their symptoms and health-related successes. It is now available in the App store.
Marisa Weiss, breast oncologist and founder of BreastCancer.org, says the app will fast-forward breast cancer research by combining academia, technology and an engaged cancer community.
“Only 5 percent of women with breast cancer participate in clinical trials, so we know very little about the other 95 percent,” she says. “The opportunity to use technology to reach women in their everyday lives is a goldmine of the best information.”
Survivorship expert Patricia Ganz, director of cancer prevention and control research at the Jonsson Cancer Center at the University of California Los Angeles, was key in developing the app with Apple.
"We're excited to use these new ResearchKit tools to expand participant recruitment and quickly gather even more data through the simple use of an app. The data it will provide takes us one step closer to developing more personalized care," said Ganz in a statement. "Access to more diverse patient-reported health data will help us learn more about long-term aftereffects of cancer treatments and provide us with a better understanding of breast cancer patients' experience."
The app uses surveys and sensor data on the iPhone to collect and track fatigue, mood and cognitive changes (commonly called chemobrain by many cancer survivors), sleep and physical activity.
Researchers at Penn Medicine, UCLA and Dana-Farber Cancer Institute, along with Sage Bionetworks, a nonprofit organization that promotes patient engagement in research, were instrumental in developing the application. In addition, numerous breast cancer organizations, including Breastcancer.org, Susan G. Komen, and the Dr. Susan Love Research Foundation worked with the developers on finessing the tool and plan to promote the app to their communities.
The app is available to all women aged 18 to 80, regardless if they have a history of breast cancer. Weiss encourages women without breast cancer to also contribute data and act as a “control group,” helping researchers distinguish symptoms due to treatment from those due to aging. By encouraging survivors to keep a continuous recording of symptoms, researchers will be able to track long-term effects, such as fatigue, that are now only recorded at interval doctor visits.
“Our current cancer care system lacks the ability to predict or treat these chronic and enduring symptoms, but Share the Journey can set us on a path toward understanding why some people recover and some do not," Ganz said in a statement.
In addition to Share Your Journey, Apple is launching other health research-focused apps as part of its ResearchKit, including one dedicated to Parkinson’s disease and another focused on diabetes.
Weiss hopes the app takes off, and with it research and future improvements to patient and survivor care. The key is to convince women to use the app with primarily altruistic motivations.
“The chance to share your journey with researchers to better understand what it means to survive breast cancer in everyday life will lead to better solutions for yourself and others,” she says.