Release Courtesy of Sage Bionetworks
Using iPhone sensors and participant surveys, the Share the Journey: Mind, Body and Wellness after Breast Cancer app tracks five common issues related to breast cancer treatment: fatigue, cognitive difficulties, sleep disturbances, mood changes, and reduction in exercise performance.
Share the Journey uses the new ResearchKit software framework announced today by 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.
Share the Journey is being developed by the nonprofit biomedical research organization Sage Bionetworks in collaboration with leading breast cancer researchers and global cancer institutions, including Patricia Ganz, MD, at the University of California Los Angeles, Kathryn Schmitz, PhD, MPH, at the University of Pennsylvania, and Ann Partridge, MD, MPH, at Dana-Farber Cancer Institute. The study, which will be continually improved based on feedback from participants, is sponsored by Sage with funding from the Robert Wood Johnson Foundation.
Share the Journey will be launched with essential support and guidance from the breast cancer community, chiefly the breast cancer organizations Susan G. Komen, Breastcancer.org, the Avon Foundation for Women, and Dr. Susan Love Research Foundation. The iPhone app-based study can transform the way research is conducted in a community that is clearly motivated to participate in projects for patients’ shared benefit and the mutual value of everyone affected by breast cancer.
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 may choose to set personal exercise goals and write about activities that positively or negatively affect their symptoms.
Collecting women’s experiences after breast cancer treatment in this unique, patient-centered study can create a trove of data based on well-validated surveys and measurements which can be analyzed for insights that can be relayed back to the breast cancer community. Participants will also be asked for feedback on how to enhance the study or better reflect their interests. In all, these tasks and surveys should take no more than 20 minutes per week, and women can participate in every aspect of the study or in only elements of their own choosing. They also can\ decide if they want to make their non-identifiable data available only to Share the Journey investigators or to qualified researchers worldwide working to solve puzzles in the area of breast cancer and beyond.
“Researchers who have made the effort to work together in the kinds of communities enabled by Sage’s platforms are becoming massively more productive,” said Friend. “But we need more data. In a traditional clinical study, you’d be thrilled to find 500 research ‘subjects.’ But imagine what is possible when you can quickly and reliably activate 20,000 research ‘partners.’ More importantly, participants need to be equal partners and be able to track changes in their own symptoms. It is through sharing insights and data among patients and researchers that we all find ‘windows of intervention’. In the pool of spontaneous thoughts and anecdotes that come from individuals are precious insights on how to improve or speed recovery from these symptoms.”
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 Bionetworks and its collaborators are also working to extend the study to include men who have been treated for breast cancer.
“We know that women and men face significant life changes after breast cancer therapy that they often don’t talk about,” said Judith A. Salerno, MD, MS, president and CEO of Susan G. Komen. “For some, there are patterns that they may not even notice, or that they dismiss, which affect their quality of life. This app gives them the ability to chart their individual progress and setbacks, all while contributing to a larger body of knowledge that will help all breast cancer patients in the future.”
“After the initial breast cancer treatment is completed, far too little attention is paid to the factors that can significantly impact a woman’s survivorship which include adhering to a long-term treatment plan and making healthy lifestyle choices,” said Marisa C. Weiss, MD, president and founder, Breastcancer.org. “If we can better understand how the side effects of treatment interfere with a woman’s various activities and her quality of life, we can provide smarter solutions to help extend and improve her life beyond breast cancer.” Breastcancer.org provides millions of women affected by breast cancer with personalized expert medical information and support to enable the best possible decisions and outcomes.
"Share the Journey will provide real-world data after breast cancer treatment,” stated MarcHurlbert, PhD, executive director, Avon Foundation for Women. “This new study and app is important for all women facing breast cancer, especially for those with metastatic disease who are often on one treatment regimen with its side effects, and then as those treatments fail, they are switched to a new regimen with a new set of physical, mental and emotional issues.”
“Share the Journey is an important milestone in patient-centered research,” said Dr. Susan Love, chief visionary officer, Dr. Susan Love Research Foundation. “Our Army of Women volunteers stand ready to participate in new research that will benefit all patients. And we look forward to comparing Share the Journey results with our own patient reported research on the Collateral Damage of treatment through our Health of Women [HOW] Study™.”
In addition to Patricia Ganz, Kathryn Schmitz, and Ann Partridge, Sage Bionetworks, led by senior physician Andrew Trister, MD, PhD, was advised in development of Share the Journey by Judy Garber, MD, MPH, at Dana-Farber Cancer Institute and Susan Love, MD, MBA, chief visionary officer of Dr. Susan Love Research Foundation.