"Foo Interview" entries
The risks and rewards of a health data commons
John Wilbanks on health data donation, contextual privacy, and open networks.
As I wrote earlier this year in an ebook on data for the public good, while the idea of data as a currency is still in its infancy, it’s important to think about where the future is taking us and our personal data.
If the Obama administration’s smart disclosure initiatives gather steam, more citizens will be able to do more than think about personal data: they’ll be able to access their financial, health, education, or energy data. In the U.S. federal government, the Blue Button initiative, which initially enabled veterans to download personal health data, is now spreading to all federal employees, and it also earned adoption at private institutions like Aetna and Kaiser Permanente. Putting health data to work stands to benefit hundreds of millions of people. The Locker Project, which provides people with the ability to move and store personal data, is another approach to watch.
The promise of more access to personal data, however, is balanced by accompanying risks. Smartphones, tablets, and flash drives, after all, are lost or stolen every day. Given the potential of mhealth, and big data and health care information technology, researchers and policy makers alike are moving forward with their applications. As they do so, conversations and rulemaking about health care privacy will need to take into account not just data collection or retention but context and use.
Put simply, businesses must confront the ethical issues tied to massive aggregation and data analysis. Given that context, Fred Trotter’s post on who owns health data is a crucial read. As Fred highlights, the real issue is not ownership, per se, but “What rights do patients have regarding health care data that refers to them?”
Would, for instance, those rights include the ability to donate personal data to a data commons, much in the same way organs are donated now for research? That question isn’t exactly hypothetical, as the following interview with John Wilbanks highlights.
Wilbanks, a senior fellow at the Kauffman Foundation and director of the Consent to Research Project, has been an advocate for open data and open access for years, including a stint at Creative Commons; a fellowship at the World Wide Web Consortium; and experience in the academic, business, and legislative worlds. Wilbanks will be speaking at the Strata Rx Conference in October.
Our interview, lightly edited for content and clarity, follows.
“It’s impossible for me to die”
Julien Smith on the realities of modern safety and our misfiring flinch reflexes.
Julien Smith believes I won’t let him die.
The subject came up during our interview at Foo Camp 2012 — part of our ongoing foo interview series — in which Smith argued that our brains and innate responses don’t always map to the safety of our modern world:
“We’re in a place where it’s fundamentally almost impossible to die. I could literally — there’s a table in front of me made of glass — I could throw myself onto the table. I could attempt to even cut myself in the face or the throat, and before I did that, all these things would stop me. You would find a way to stop me. It’s impossible for me to die.”
[Discussed at the 5:16 mark in the associated video interview.]
Smith didn’t test his theory, but he makes a good point. The way we respond to the world often doesn’t correspond with the world’s true state. And he’s right about that not-letting-him-die thing; myself and the other people in the room would have jumped in had he crashed through a pane of glass. He would have then gone to an emergency room where the doctors and nurses would usher him through a life-saving process. The whole thing is set up to keep him among the living.
Acknowledging the safety of an environment isn’t something most people do by default. Perhaps we don’t want to tempt fate. Or maybe we’re wired to identify threats even when they’re not present. This disconnect between our ancient physical responses and our modern environments is one of the things Smith explores in his book The Flinch.
From smartphones and continuous data comes the social MRI
Dr. Nadav Aharony used phone sensors to explore personal behaviors and community trends.
It’s clear at this point that the smartphone revolution has very little to do with the phone function in these devices. Rather, it’s the unique mix of sensors, always-on connectivity and mass consumer adoption that’s shaping business and culture.
Dr. Nadav Aharony (@nadavaha) tapped into this mix when he was working on a “social MRI” study in MIT’s Media Lab. Aharony, who recently joined us as part of our ongoing foo interview series, described his vision of the social MRI:
“If you think about it, the three things you take with you when you go out of your home are your keys, your wallet and your phone, so our phones are always with us. In aggregate, we can use the phones in many people’s pockets as a virtual imaging chamber. So, one aspect of the social MRI is this virtual imaging chamber that is collecting tens or hundreds of signals at the same time from members of the community.” [Discussed at 1:16]
Aharony’s work focused on 150 participants (about 75 families) that were given phones for 15 months. During that time, more than one million hours of “continuous sensing data” was gathered with the participants’ consent. The data was acquired and scrubbed under MIT’s ethics guidelines, and for extra measure, Aharony included his own data in the dataset.
Collecting the data was just the beginning. Parsing that information and creating experiments based on emerging signals is where the applications of a social MRI became significant.
Read more…
You still need your own website
Brett Slatkin on the federated social web and why a website still matters.
Brett Slatkin's hope for a federated social web hasn't worked out as expected, so he's shifting perspective from infrastructure to user behavior. Here he explains why you shouldn't abandon your website for third-party platforms.
Ten years of Foo Camp
The purpose of Foo Camp and a look at emerging themes from the latest gathering.
We curate topic areas and interesting people, but Foo Camp is designed to be an idea collider. It's an intentional serendipity engine that works the seams in between.
Copyright and "intellectual disobedience"
Artist Nina Paley on pushing the boundaries of copyright.
"Sita Sings the Blues" creator Nina Paley explains her "intellectual disobedience" stance on copyright and notes that current copyright laws are "completely out of touch with human behavior."
Stories over spreadsheets
Kris Hammond on replacing rows and columns with sentences and paragraphs.
Imagine a future where clear language supplants spreadsheets. In a recent interview, Narrative Science CTO Kris Hammond explained how we might get there.
Can Future Advisor be the self-driving car for financial advice?
A startup mashes personal and government data with algorithms to provide automated advice.
Given the turmoil in financial markets and uncertainty abroad, good financial advice has never been more valuable. Startup Future Advisor looks to democratize personalized financial advice using the Internet, data and algorithms.
What do mHealth, eHealth and behavioral science mean for the future of healthcare?
Dr. Audie Atienza focuses on the intersection of behavioral science, data and healthcare apps.
We're just at the beginning of discovering how to best develop and utilize mobile technology to improve the health of individuals and the public, says Dr. Audie Atienza.
Think of it like a political campaign: Baratunde Thurston's book marketing
Inside the promotion of "How To Be Black."
Make it easy for people to help you — that’s a simple but oft-overlooked concept that author Baratunde Thurston says is essential to book marketing. He shares additional marketing tips and tools in this interview.