May 11, 2015 — Sage Bionetworks, together with collaborators in the research community, announced the launch of a patient-centered, iPhone app-based study of the causes of symptom variations in the breast cancer community
Share the Journey: Mind, Body, and Wellness after Breast Cancer was developed by Sage Bionetworks along with Patricia Ganz, M.D., at the University of California Los Angeles; Kathryn Schmitz, Ph.D., MPH, at the University of Pennsylvania; and Ann Partridge, M.D., MPH, at Dana-Farber Cancer Institute. The study is sponsored by Sage with funding from the Robert Wood Johnson Foundation.
Share the Journey uses the new ResearchKit software framework from Apple to make it easy for researchers to gather data more frequently and more accurately from participants using iPhone apps. ResearchKit enables participants to easily complete tasks or submit surveys right from the Share the Journey app and delivers a simple way to present participants with an interactive informed consent process. The app utilizes Sage Bionetworks’ Bridge server platform.
Women who have undergone surgery, radiation or drug therapy to treat breast cancer may experience symptoms that affect quality of life and impede recovery. Participants in Share the Journey will be prompted to set personal exercise goals and write about activities that may positively or negatively affect their symptoms. By collecting this and other data from iPhone sensors, participant surveys and health diaries, Share the Journey tracks five common consequences of breast cancer treatment: fatigue, cognitive difficulties, sleep disturbances, mood changes and reduction in exercise performance.
Participants will also be asked for feedback on how to enhance the study or better reflect their interests. These tasks and surveys should take no more than 20 minutes per week, and women who take part can participate in every aspect of the study or in only elements of their own choosing. Collecting women’s experiences after breast cancer treatment in this unique study can create a trove of data based on well-validated surveys and measurements continuously improved upon based on feedback from study participants.
“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 Stephen Friend, M.D., Ph.D., president of Sage Bionetworks and Share the Journey principal investigator. “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.”
Share the Journey is open to women in the U.S. between the ages of 18 and 80, with or without a history of breast cancer. Women without a history of breast cancer will contribute important data to Share the Journey that will help researchers understand which symptoms may be related to previous cancer treatment and which may be part of the normal aging process. A Spanish-language version of the app and efforts to expand the study to additional geographies are under development. Sage and its collaborators are also working to extend the study to include men who have been treated for breast cancer.
“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,” said Ganz, M.D., professor at the UCLA Fielding School of Public Health and director of cancer prevention and control research at UCLA’s Jonsson Comprehensive Cancer Center. “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.”
Share the Journey: Mind, Body, and Wellness after Breast Cancer, available for download on the App Store.
For more information: www.sagebase.org