It’s time for a New Deal on Data.
Almost every domain of human life today is being infiltrated by technology. Smartphones, smart watches, smart homes, smart bicycles: little networked computers are the vigilant watchers surrounding us, our constantly close companions. A natural side effect of computer activity is data: machines love to produce organized data about whatever they can. It’s what they do best, really.
For years now, decades even, most people in this country have had all kinds of data collected around and about them. The data is organized as information, stored in different places for different reasons. I would say more than 99.9% of us have no idea where and what that data looks like.
An emerging truth in our world today is that data can help us. Data can be used to describe and predict human behaviors in startling ways. Networked technology is most certainly keeping tabs, and as casual surveillance is going on it can, and most certainly should, be leveraged back at us for positive health outcomes.
For example, most us of are enrolled to participate in some kind loyalty program at a grocery store. We plug in our phone number or email at a check out line, get our receipt and go. What if that store or company provided us, as members of their loyalty program, a simple visualization of our diet over time: what category of foods we have bought and when. Imagine walking into a nutritionist appointment with a statistical display of what kind of foods you have been eating for the past six months. Consider that metabolic disease is on the rise in our world, imagine that some of the algorithms being refined to understand an individual’s microbiome could link up with the consumer statistics.
It would not be difficult for concepts like these to thrive in our market driven society, but there are greater ethical implications behind them. The integration of data, health, and human behavior is one of the “holy grails” promised to us by a technologically enabled future.
In 1984, Stewart Brand, notable author and global business leader once said, “Information wants to be free.” That phrase has never been more true in today’s world. In an age of ubiquitous technology, we should have access to our own data footprint, especially in and around the domains of health and social behavior.
Remember those EULA agreements we tick off whenever we want a free service on the internet? That is us signing our personal data off to somewhere we will most likely never, (or only through great technical difficulty,) ever have access to. What if we became the proprietors of that data? What if data about us lived in one place, with us: on our phone and in a personal cloud on the internet. Say we agreed to sign on to a virtual service or product, the service would contact our personal cloud for access in a formal agreement rather than “spying” on us, siphoning our personal data away in exchange for the virtual commodity. What if the data was in our hands. It’s called Open Data and it’s a radical, revolutionary concept in the industry of technology with great benefits to agency everywhere, from law enforcement to civic, public, and social health. The implications of Open Data are much more significant than fixing traffic jams: imagine referencing genetic vulnerabilities with years of aggregate behavioral markers, or applying for jobs and social support services as if you were swiping on Tinder. Imagine being hauled into a strange hospital alone, unconscious and with a drug allergy, having an ER nurse tap your phone with an ipad to get all your medical records in a snap.
Those promised “miracles” of technology will only become available when we begin to truly have access to our personal data. The infrastructure is in place, it has been for years. If you could look behind the curtain of an individual person’s “data landscape” today, there is no doubt that you’d see a jumbled mess. Tens, maybe hundreds of separate “containers,” profiles siloed away from each other, hoarded behind systemically antiquated models of commercial efficacy. It’s not good business, and it’s certainly not soluble health and social policy. What we need in our country is a New Deal on Data: centralized aggregation of the personal data we generate. Formal, transparent agreements between individual and agency around access. Robust legal data protections, and most of all personal insight granted to individual. It’s past due, we need a future where personal data lives in the hands of the end users of a system, period.
