UCLA: Share the Journey: Mind, Body and Wellness after Breast Cancer is available now on the iTunes App Store. UCLA cancer research pioneer Dr. Patricia Ganz and collaborators Apple and Sage Bionetworks announced, on March 9, the launch of Share the Journey: Mind, Body and Wellness after Breast Cancer, a patient-centered mobile app that empowers women to be partners in the research process by tracking their symptoms and successes.
Available for download at the iTunes App Store, Share the Journey was developed by UCLA’s Jonsson Comprehensive Cancer Center,
Penn Medicine, Dana-Farber Cancer Institute and Sage Bionetworks. The
app is an interactive research study that aims to understand why some
breast cancer survivors recover faster than others, why their symptoms
vary over time and what can be done to improve symptoms.
Ganz, who is director of cancer
prevention and control research at the Jonsson Cancer Center, was a key
collaborator with Apple and Sage in developing Share the Journey, which
marries science and technology by using surveys and sensor data on the
iPhone to collect and track fatigue, mood and cognitive changes, sleep
disturbances and reductions in exercise.
Share the Journey is one of five new apps being launched in
conjunction with Apple’s ResearchKit, an open-source tool that serves as
a streamlined hub for iOS apps that can help speed scientific progress
toward cures by amplifying the patient voice in shaping research
directions and outcomes.
Share the Journey shifts the center of care, healing and intervention
into the hands of women who have survived breast cancer. Its creators
say that collecting women’s experiences after breast cancer treatment
will create a trove of data based on well-validated surveys and
measurements that will be continuously improved upon based on the
Women who have undergone surgery, radiation or drug therapy to treat
breast cancer often experience symptoms that affect their quality of
life and impede recovery.
“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, who also is a
professor at the UCLA Fielding School of Public Health. “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.”
Share the Journey is open to women between the ages of 18 and 80 who
live in the United States, whether or not they have had breast cancer.
Those who have not had breast cancer will contribute important data to
the app that will help researchers understand which symptoms may be
related to cancer treatment and which may be part of the normal aging
process. The developers also are creating a Spanish-language version of
the app and planning to expand the study to other countries.
“One reason to build these apps and run these studies is to see
whether we can turn anecdotes into signals, and by generating signals
find windows for intervention,” said Dr. Stephen Friend, president of
Sage Bionetworks and a principal investigator for Share the Journey.
“We’re most interested in disease variations and the hourly, daily or
weekly ebb and flow of symptoms that are not being tracked and
completely missed by biannual visits to the doctor.”
The platform is based on the concept that if individuals’ experiences
were at the center of the research process, researchers working in
virtual teams might be able to get efficient, inexpensive and ubiquitous
ways of gathering information using websites, tablets or an app. This
technology will allow Sage and other teams to include patients and other
study participants as owners of their own data and equal partners.
“We need to better understand some of the long-term negative
treatment effects, such as fatigue, that can be associated with the
disease control benefits of cancer therapies. What are the biological
mechanisms that underpin those effects and why some survivors are more
vulnerable to those effects than others,” Ganz said.
“With Share the Journey, women can tell us when something’s wrong,
and the app has the potential to capture valuable information on the
patient experience. 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.”
In addition to Ganz, Apple and Sage were advised in development of
Share the Journey by Drs. Ann Partridge and Judy Garber at Dana-Farber
Cancer Institute, Dr. Kathryn Schmitz at the University of Pennsylvania
Perelman School of Medicine and Dr. Susan Love at UCLA and the Dr. Susan
Love Research Foundation.