We Need a Personal Data Task Force

December 11, 2013

Earlier today John Wilbanks sent out this tweet:

 

John was lamenting the fact that he couldn’t export and store the genome interpretations that 23&Me provides (they do provide a full export of a user’s genotype). By the afternoon two developers, Beau Gunderson and Eric Jain, had submitted their projects. (You can view them here and here).

We’ve doing some exploration and research about QS APIs over the last two years and we’ve come to understand that having data export is key function of personal data tools. Being able to download and retain an easily decipherable copy of your personal data is important for a variety of reasons. One just needs to spend some time in our popular Zeo Shutting Down: Export Your Data thread to understand how vital this function is.

We know that some toolmakers already include data export as part of their user experience, but many have not or only provide partial support. I’m proposing that we, as a community of people who support and value the ability to find personal meaning through personal data, work together to provide the tools and knowledge to help people access their data.

Would you help and be a part of our Personal Data Task Force*? We can work together to build a common set of resources, tools, how-to’s and guides to help people access their personal data. I’m listening for ideas and insights. Please let me know what you think and how you might want to help.

Replies on our forum or via email are welcomed.

*We’re inspired by Sina Khanifar’s work on the Rapid Response Internet Task Force.

Related Posts

A Stage-Based Model of Personal Informatics Systems

Gary Wolf

July 3, 2020

Earlier today John Wilbanks sent out this tweet: Help me build a @23andme health data export app. $500 reward. Details at http://t.co/dC2ZX1F2OK — John Wilbanks (@wilbanks) December 11, 2013   John was lamenting the fact that he couldn’t export and store the genome interpretations that 23&Me provides (they do provide a full export of a user’s...

A Framework for Personal Science

Gary Wolf

July 2, 2020

Self-tracking. Self-experiment. N-of-1 methods. Single subject research. The kinds of self-research seen in the Quantified Self community are described by a thicket of labels. In a perspective article recently published in Frontiers in Computer Science, Gary Wolf and Martijn de Groot attempt to provide a clear definition and framework for research.

Interview: Mad Ball of Open Humans

Gary Wolf

March 2, 2020

Mad Ball was a rising scientist at Harvard who switched to build a nonprofit foundation creating tools for the future of self research: "I wanted to do things that would not have happened otherwise had I not been present to question those boundaries. What we’re doing, nobody else is doing."