UCLA Health System has long been recognized as one of the nation’s finest medical centers andApple has also applied some of its hi-tech efforts to healthcare with its innovative Apple Watch. On March 9, UCLA cancer research pioneer and collaborator Patricia Ganz, MD, Apple, and Sage Bionetworks today announced the launch of Share the Journey: Mind, Body and Wellness afterBreast Cancer, which is a patient-centered mobile app that enables women to be partners in the research process by tracking their symptoms and successes.
The new app is now available for download on the iTunes App Store. It was developed by UCLA’s Jonsson Comprehensive Cancer Center, Penn Medicine, Dana-Farber Cancer Institute and Sage Bionetworks. The app is an interactive research project that attempts 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.
Dr. Ganz, who is director of cancer prevention and control research at the Jonsson Cancer Center, was a major collaborator with Apple and Sage in developing Share the Journey, which merges 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, which are being launched in conjunction with Apple’s ResearchKit, an open-source tool that serves as a streamlined nucleus for iOS apps that can help speed scientific progress toward cures by strengthening the patient voice in shaping research directions and outcomes. The app shifts the focus of care, healing and intervention into the hands of breast cancer survivors. Its creators explain that collecting women’s experiences after breast cancer treatment will create a wealth of data based on well-validated surveys and measurements that will be continuously be improved upon based on the participants’ feedback.
Women with breast cancer who have undergone surgery, radiation, or drug therapy often experience symptoms that affect their quality of life and hamper recovery. Dr. Ganz, who is also a professor at theUCLA Fielding School of Public Health, explained, “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. 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 Share the Journey app is available to women between the ages of 18 and 80 who live in the US, whether or not they have had breast cancer. Those who have not had breast cancer will contribute important data to the app that will aid researchers in understanding which symptoms may be related to cancer treatment and which may be part of the normal aging process. In addition, the developers are creating a Spanish-language version of the app and planning to expand the study to other nations.
“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,” explained Dr. Stephen Friend, president of Sage Bionetworks and a principal investigator for Share the Journey. He added, “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 app is based on the concept that if an individuals’ experiences were at the core of the research process, researchers working in virtual teams might be able to obtain efficient, inexpensive, and global methods of gathering information using websites, tablets, or an app. This technology will allow Sage and other researchers to include patients and other study participants as owners of their own data and equal partners. Dr. Ganz explained, “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.” She added, “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.”