Breast Cancer Research's New Appy-Place: Share the Journey
March 2015
During Apple’s recent annual Spring Forward event, a new app called Share the Journey was launched by Sage Bionetworks. Share the Journey, now available in its first iPhone release, is free, and is based on a new open source (also free) platform called ResearchKit.
Share the Journey: Mind, Body and Wellness after breast cancer is a clinical study that aims to understand the symptoms after breast cancer treatment, why these symptoms vary over time, and what can be done to improve them. Why the buzz? Because it is widely felt ResearchKit has the potential to revolutionize the way researchers collect and analyze patient-reported data.
Perhaps the biggest take-home message for the millions of people who have received treatment for breast cancer, is that this app provides a way to use smart phones to better understand and manage the collateral damage of those treatments. Not only that, but participants are contributing anonymous data to a larger pool of knowledge that will help breast cancer patients in the future.
Individuals using the app will report five common consequences of breast cancer treatment: fatigue, cognitive difficulties, sleep disturbances, mood changes and a worse exercise performance. To better understand the way that their symptoms are affecting their life, the app collects data from their phone itself, such as how much they move in one day. It is important to note that providing this information is optional.
The research goals are to understand the causes of the symptom variations after breast cancer treatment; to learn how mobile devices and sensors can help to identify these symptoms and their progression; and to ultimately improve the quality of life for people after breast cancer treatment.
Share the Journey is just the first step. The appeal of ResearchKit is that it will eventually allow apps to be tailored to women in different situations with a variety of issues, such as young survivors, individuals with inflammatory breast cancer, and those with metastatic disease. It is hoped that this amazing platform will accelerate the acquisition of data about the consequences of treatment and how best to deal with them.
It’s all very simple. Participants download the mobile app, give their consent to enroll, perform simple tasks, and then track their health on the app’s dashboard.
Woman aged 18 and 80 years with or without a history of breast cancer are invited to join the study. Participants must be U.S. residents and have a personal iPhone. This study is sponsored by Sage Bionetworks, a 501(c)(3) nonprofit research organization with funding from the Robert Wood Johnson Foundation.
