Tag Archives: ownership

We Need a Personal Data Task Force

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.

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You Own Your Health Data

You “own” your own health data. That is clear if you generate it yourself, as self-trackers do. But even when others generate health data for you, you should have full access and “ownership” of it. They are only “borrowing” the data.

But not every health care provider makes it easy to get cheap access to the quantified data about your body. Therefore an explicit declaration that everyone should be legally ensured of that access is a good thing. It has no legal binding, but if enough people endorse it, and pledge to honor it, and make a point of patronizing those doctors and health providers that also honor it, then maybe it can become something to enforce.

Here is what such a declaration of health data rights might look like, as developed by a volunteer group of doctors, providers, professors, journalists, and bloggers. I was happy to see an early version and sign the endorsement. Consider this declaration a beta version. There are just four simple, hard to deny claims:

We all

  • Have the right to our own health data
  • Have the right to know the source of each health data element
  • Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
  • Have the right to share our health data with others as we see fit

The growing list of endorsements for these essential claims can be found at Health Data Rights. Add your signature if you think these rights to be fundamental for a 21 century health care system. You can also add your endorsement by sending a tweet to #myhealthdata.

Next step: If you are a health care provider who generates or captures health data of patients, and you honor these rights, then place a badge or announcement declaring you do. It will help shame others into getting up to speed.

180Px-Declaration Of Rights

This is is not quite the same thing as the handwritten copy of the Declaration of the Rights of Man and of the Citizen (1789)  but it is agreement with the older document’s aim to establish rights that will seem intuitive to later generations.

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