As part of GovLab’s regular Ideas Luncheons (see posts on past speakers, Brian Behlendorf and Joel Gurin), Professor Deborah Estrin visited the GovLab on August 14th to discuss how increased access to “data about me” can be used to improve people’s lives. Deborah, a self-identified “marginal academic,” who likes to keep one foot in the real world and one in the academy, recently relocated from Los Angeles to New York City where she is a Professor of Public Health at Weill Cornell Medical College and a Professor of Computer Science at the new Cornell Tech campus. The embodiment of interdisciplinary thinking, Deborah has a diverse range of experience and expertise. She served as a co-Primary Investigator on many Defense Advanced Research Projects Agency (DARPA)- and National Science Foundation (NSF), funded projects, and founded, UCLA’s Center for Embedded Network Sensing (CENS). She is also one of the founders and leaders of the citizen science movement. Her latest venture involves the non-profit startup, Open mHealth.
Building on her pioneering work in networked sensing, Deborah’s current work focuses on streaming the data that service providers collect about individuals back to them to enable greater insights into one’s own health. Mobile carriers, e-commerce sites, search engines, and vendors such as Walgreens and Whole Foods, all capture personal traces, in digital format, that can be synthesized and aggregated to reveal patterns about disease. More trips to restaurants and fewer to the store might translate into a predictor of declining health. Traveling shorter distances from home might mean the possible onset of depression. Of particular importance, these changes in behavioral patterns often emerge before a person is even aware of medical symptoms. For example, Cincinnati Children’s Medical Center found that teenagers with Crohn’s disease stayed closer to home well before reporting enhanced symptoms.
Deborah’s current focus on mobile health is premised on the belief that data access and continuous personalized analytics are particularly valuable when applied to health and self-care. Recalling a conversation with Curtis Cole, a close friend and Chief Information Officer at Weill Cornell, Deborah noted that once an individual is on three medications, there is no evidence base for what works. We have poor mechanisms for turning the data generated as a by-product of our daily activities into personalized insights about our health. Deborah is looking to change this by building the secure infrastructure to encourage vendors like cable companies and grocery stores to give back the data about our usage habits in a secure data vault. As she sees it, individuals could be given access to data traces by opting-in through a “personal data API”. Creating a rich personal data ecology would give rise to a new market of personal informatics and mobile applications that could help individuals approach important decisions in a more thoughtful and systematic way.
As the big data buzz continues to grow, Deborah’s focus on small data—my data about me—is a reminder of the opportunities that lie within highly personalized data sets that pull from diverse consumer services. Deborah does anticipate certain challenges including encountering long running debates surrounding the security of personal data vaults as well as the more technical challenge of collecting and processing diverse data sets from third-party providers. A strong believer in rapid experimentation, Deborah is eager to add to her growing list of collaborators (Intel Labs, IBM, Time Warner Cable, and more) on prototypes and pilots. To learn more about Deborah’s current work with small data, visit the small data project’s website. You can also check out the slides to her presentation below. We are very fortunate that Deborah has chosen New York City as a testbed for small data projects and are looking forward to hearing more about and learning from her experiments.
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