It’s Not Just the Watch: Apple Also Helping Cancer Patients
Mar 9, 2015, 11:21 AM, Posted by Catherine Arnst
“I am dying literally, at my home in Hollywood, of metastatic breast cancer ... For six years I’ve known I was going to die, I just don’t know when.”
That was written by renowned journalist Laurie Becklund, a former Los Angeles Times correspondent, shortly before she died on Feb. 8 at age 66. Her powerful Los Angeles Times essay was not a lament, however, but a fierce call to action for better cancer research; informed by much, much better data.
As she noted, each cancer patient’s disease is unique, yet there is no system in place to gather data on these tens of thousands of individual diseases. If there were, the data would enable both lab research and clinical trials to be far more efficient, and effective. “The knowledge generated from our disease will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics, and what treatments did and didn’t help them,” Becklund wrote. “In the big data era, this void is criminal.”
I agree. But such a database may finally be in the offing, thanks to the rapid proliferation of mobile devices. Apple Computer’s watch will likely add to that proliferation, but that’s not why we at the Robert Wood Johnson Foundation (RWJF) are excited about the company’s big announcement today. Apple also announced ResearchKit, a software framework it developed that helps doctors and scientists conduct medical research by collecting data more frequently and more accurately from people who are using mobile apps. In addition, Apple shared news of a suite of five free mobile apps for ResearchKit—two of which were developed by Sage Bionetworks with RWJF support.
The Sage Bionetworks apps, mPower and Share the Journey, gather personal data on Parkinson’s disease and breast cancer, respectively, and provide patients with a key safeguard—the ability to use their mobile devices to provide informed consent for use of their data. By ensuring that patients can choose how and when their personal health data is shared, more people should feel encouraged to participate in the kinds of databases Becklund was calling for.
The other three apps released with ResearchKit focus on cardiovascular disease, diabetes, and asthma, respectively.
Data from all five apps will be collected and aggregated via BRIDGE, a Sage Bionetworks platform also developed with RWJF funding that allows people to easily contribute their health data to research studies, with appropriate privacy safeguards.
People who live with all of these diseases are untapped experts, and ResearchKit gives them the opportunity to share their expertise with biomedical researchers. Although the apps announced today focus on specific diseases, it is just the start. We believe that data collected via apps will help researchers and policymakers gain all kinds of insights into population health and the actions needed to improve health for all.
The Sage Bionetworks apps are not RWJF’s first health IT rodeo. We’ve been working in this space for more than a decade, supporting a broad range of projects that are exploring the ways technology and data can transform health. A few examples:
- MIT Media Lab—In September RWJF supported the launch of a Wellness Initiative to address the role of technology in shaping our health.
- PatientsLikeMe—With support from RWJF, this network of patients is building a platform, the Open Research Exchange, to develop new measures for capturing and reporting different aspects of health.
- Open mHealth—To make digital health data as useful as possible, it is building products designed to bolster collaborative, connected, personalized care.
- Quantified Self Labs—The Quantified Self-Access Program is convening stakeholders, highlighting innovative solutions to patient data access, and fostering awareness and collaboration among developers, health care providers, and patients.
- Genetic Alliance—In December RWJF supported the creation and evaluation of the effectiveness of a simplified version of its Platform for Engaging Everyone Responsibly (PEER), which enables people to share health information with researchers and each other on their own terms.
- Health Data Exploration Project—The project is creating a network of innovators in personal health data to catalyze the use of personal data for the public good.
We encourage others to join in this effort to make patient data accessible and useful. As Laurie Becklund wrote, “patients shouldn’t have to climb up ladders and fall down chutes.” It’s time to end this game.