SEATTLE–(BUSINESS WIRE)–Sage Bionetworks, together with collaborators 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, today announced the launch of Share the Journey: Mind, Body, and Wellness after Breast Cancer, a patient-centered, iPhone app-based study of the causes of symptom variations in the breast cancer community. The study is sponsored by Sage with funding from the Robert Wood Johnson Foundation.
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, MD, PhD, president of Sage Bionetworks andShare 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.”
“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.’ Similarly, gathering data a few times per year is the traditional gold standard, so imagine the possibilities when we are able to gather data continuously, all the time.”
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.
“Because of the successes of early detection and better cancer treatments, we’ve created a situation where there are now 14 million cancer survivors, many of whom will live for decades as a brand-new chronic disease population,” said Kathryn Schmitz, PhD, MPH, Professor of Epidemiology, University of Pennsylvania Perelman School of Medicine. “Patients don’t often know they should be expecting these sometimes persistent adverse effects. They don’t know, or they simply believe that it’s just what they should expect and there’s nothing that can be done about it. The Share the Journey app is a tool that may help breast cancer survivors become more empowered to care for themselves.”
“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 Patricia Ganz, MD, professor at the UCLA Fielding School of Public Health and Director of Cancer Prevention & 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.”
“This is a beautiful marriage of technology and medicine, and a potentially extraordinary resource for research and for learning about how what people are doing day-to-day may affect their post-treatment symptoms,” said Ann Partridge, MD, MPH, Founder and Director, Program for Young Women With Breast Cancer, Director, Adult Survivorship Program, and Senior Physician at Dana-Farber Cancer Institute. “For breast cancer survivors, this is an opportunity to work on improving health by harnessing a technology that is already part of their daily lives, where their experiences can be shared with the broader breast cancer community so they can support each other and learn from each other.”
“Dana-Farber is very excited about any tool designed to help survivors map out a clearer plan for living well after cancer. For our patients in particular, this tool holds the potential to be a strong complement to Dana-Farber’s existing survivorship services, which help survivors build an exercise plan, improve sleep habits, learn mindfulness techniques, and much more. We are also excited to learn in real-time from the experiences of patients using the app, which will be a very powerful research tool to ultimately improve how we counsel patients about what helps and what doesn’t help after cancer treatment,” said Partridge.
