The launch of Sage Bionetworks’ Share the Journey breast cancer research app on Monday at Apple’s Spring Forward event was a game-changer in more ways than one.
First and foremost, for the millions of people who have received treatment for breast cancer, it’s a way to use smart phones to better understand and manage the collateral damage of those treatments. And, at the same time, to contribute de-identified data to a larger pool of knowledge that will help breast cancer patients in the future.
Second, the accessibility of this app will enable thousands of people who normally wouldn’t have an opportunity to participate in research to help themselves while contributing to the greater good. For years, our Army of Women volunteers have demanded more opportunities to participate in research. Share the Journey has the potential to be an unprecedented source of patient-reported data, in real-time and encrypted for privacy, which could be the catalyst for accelerating progress in managing the impact of breast cancer and other diseases.
One of the most important, but little-recognized, game-changing aspects of this new research tool was Apple’s involvement and what that represents for the breast cancer community. Apple could have slapped a pink ribbon on their iPhone cases during October, or donated a percentage of their October pink iPhone sales to one of the breast cancer organizations, and called it a day. Instead, they chose to put skin in the game, working with Sage Bionetworks to develop ResearchKit — a completely Open Source (read: FREE) platform for the medical research community to help collect patient-reported data efficiently, effectively, and inexpensively.
This means that Share the Journey is only the first app for breast cancer research, and it is indeed a pilot to show that this approach works. The new ResearchKit will allow us to tailor apps to women in different situations with different issues, such as the young survivors and those with metastatic disease! It is a remarkable platform that will accelerate the acquisition of data about the consequences of treatment and how best to deal with them. We look forward to continuing to work with Sage to enhance the new app for both personal value to the users and added value to the research community. Watch this space, because Sage will soon be recruiting through the Army of Women for a core group of volunteers to provide direct input for future enhancements.
Sage Bionetworks is a not-for-profit organization that saw a need and an opportunity, recognized where their expertise could be leveraged, found a strong and passionate funding partner in Robert Wood Johnson Foundation, and put their hearts and souls into changing the game.
Sage and Apple have skin in the game with ResearchKit and the newly-announced apps for breast cancer, Parkinson’s, cardiovascular, diabetes, and asthma that were launched at Apple’s event. The app is free, like all good apps should be, and the code is open, so researchers can use this tool to design and launch their own app-based studies. There’s no hidden profit motivation or direct commercial gain for Apple or Sage here, except in how the public shows their appreciation of the value they place on corporate social responsibility.
Dr. Susan Love Research Foundation has long believed that breakthroughs in breast cancer research will come at the intersection where science, technology, and the public meet.
So kudos to Apple and Sage Bionetworks for putting skin in the game to advance medical knowledge. We hope other corporations will come forward with both innovative ideas and the willingness to put resources behind them to better care for the breast cancer community, and to help find ways to prevent or eliminate breast cancer completely.
Share the Journey is not just another pink curling iron. It’s proof that for-profit ventures can add insight, expertise, and vital resources to our mission of achieving a future without breast cancer.
You can learn more or download Share the Journey here.
Source: Huff Post