What if you had a check engine light for your personal health? In a recent TEDMED Talk, Cornell Computer Science Professor Deborah Estrin argues that “small data” acts as a “digital social pulse” that could help each of us keep tabs on our own health.
By “digital social pulse” Estrin is referring to the breadcrumbs of digital data we each create as our daily lives are mediated by technology. We are continuously generating digital data from the online services we interact with – search engines, social networks, and mobile carriers. But even as our digital pulses become increasingly comprehensive and personal (nearly two-thirds of American adults now carry a smartphone), our data almost never gets returned to us – the user who created it.
Small data is about taking the myriad of data traces we generate every day and turning them into insights for each of us as individuals. It contrasts “big data,” or the aggregate trends that the service providers we access already capture and analyze extensively to improve their service, target advertising, and provide personalization.
There’s no existing service that repackages any significant portion of this data in an accessible format for users, but Estrin believes there should be. This is why she started the Small Data Lab at Cornell Tech and co-founded Open mHealth, a non-profit startup focused on developing open-source software for sharing health data.
Cornell Professor Deborah Estrin explains how “small data” could give us a clearer picture of our personal health
In November, the Small Data Lab and Open mHealth teamed up with Android developer touchlab to create Research Stack, an initiative similar to Apple’s ResearchKit but for Android. Apple’s ResearchKit, released in March, has already helped scientists at leading medical schools write apps to study asthma, Parkinson’s disease, breast cancer, melenoma, and other ailments. But as Estrin points out, “You can’t just do research studies on people who can afford iPhones.” An overriding goal of ResearchStack is to help developers and researchers with existing apps on iOS to more easily adapt those apps for Android.
Small data could be especially powerful for people with chronic diseases like arthritis, depression, or memory disorders. With chronic pain, for example, patients experience tremendous day to day and week to week variability, subtle changes, and confounding factors that make it hard to give reliable feedback on how exactly they’re feeling or responding to a given treatment. But many of these conditions play out in day to day activities and behaviours that can be traced through our digital activities. Small data – by providing a digital pulse – could be an objective indicator that compliments our subjective experience of health and informs professional and personal health care decision making.
Many of us have misgivings about our daily activities and behaviours increasingly being used as data, and it’s obviously not simple to convert these data into robust markers of health. But Estrin says we can overcome both barriers. Instead of fighting the big data trend, she argues for a “data liberation,” giving all of us the ability to mine digital data for our own purposes.
If we can get the data back to us and provide an open architecture, Estrin believes that a range of services will grow up around that data, allowing us to make sense of it while navigating valid privacy concerns.