We leave a long trail of digital breadcrumbs every day as we go about even the most mundane tasks: Answering e-mail; making phone calls; using GPS to find a post office; shopping for dinner; tracking our sleep and steps with a Fitbit.
Data collected from search engines, social networks, and mobile carriers, combined with smart apps, can turn these tracks into a continuous, real-time picture of our personal health, said Deborah Estrin, co-founder of the non-profit open software builder Open mHealth and a professor of Computer Science at Cornell Tech, speaking at TEDMED 2013 in April.
“I’m not taking about doing detailed medical diagnosis…replacing the communication between you and your doctor and with your loved ones or even your own self-awareness. I’m talking about enhancing each of these with personalized, data-driven insights…such as early warning signs of a problem or gradual improvement in response to a treatment,” she said.
She continued, “I like to think of it as a digital social pulse, because it’s a single measure that I can look at over time that represents my well being, and social because it’s something I can selectively share with a small number of friends and family. Once we as patients can get access to our small traces — our small data — we’ll be able to fuel a new market of apps and services,” she said.
Though our daily behaviors are already monitored and analyzed extensively, the results are unavailable to users and there’s no vehicle to make them accessible, Estrin said in an interview today.
“There’s nothing lost by letting an individual have their data back, and having them do things that are useful with it,” she said. “It simply plays into having people manage their lives and their health and welfare. Imagine the utility that I will get out of an app that helps me figure out whether I’m taking supplements in an effective dose or not, or helps me monitor a my kid whose going away to college who has a complicated health issue.”
Though Estrin co-founded Open mHealth in 2011, the group is already working on a number of initiatives, including a web app called ClinVis that trends subjective units of depression (SUD) scores. Estrin is already building a coalition of service providers and app developers for this venture. She’ll meet with a few major phone and network service providers in a few weeks to start a smaller-level “virtual testbed” in New York City. Wikilife, a collaborative that seeks to anonymously collect and share health data to measure the health impact of lifestyle choices and nutritional habits, among other measures, is also considering implementing Open mHealth’s API, she said.
Some carriers are apprehensive about appearing to violate privacy regulations, Estrin acknowledges, but adds, “There is a lot of interest in making sure this is done securely, and receptiveness to the notion of personal data vaults within the cloud. I think that the minute we can prototype an initial viable product and a couple of feeds and let people come together and run some apps, we’ll see a lot of uptake,” she says.
The apps will be built on an open-source development platform, which dovetails with the project’s goal of shared knowledge.
“Part of the story of small data is having it happen in an open architecture content because you can then build upon each other’s skills. You’re not counting on any one vendor to build the system, and you get a very exciting Internet economy,” Estrin says.
Watch her talk at TEDMED 2013, and click here if you’re interested in a compilation of your own small data.