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Carla and Her Data is a research project supported by the Omidyar Network, which explores data and privacy from various angles, including looking at Dr. John Snow, the original "data detective". The free PDF book has been piloted in a college classroom setting and as an intergenerational activity, with positive grassroots impact.
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Chapter Summaries
Chapter Summaries
Chapter 1
Reviews the current state of data in the midst of the covid-19 crisis, and the typical way data is handled through SEAM cycles: surveillance > extraction > analysis > manipulation. Introduces new terms and concepts as a potential response.
Chapter 2
Explores the concept of what fiduciary responsibility is, a legal precedent that exists in our world already, where certain professionals have a “duty of care” to act in our best interests. We meet Carla, and look at questions about data that are raised when she gets tested for Covid. And we consider a new fiduciary formula: D>=A, which sets forth the principle that our rights in the digital world should be at least equal to or greater than the rights we have in the analog world.
Chapter 3
In this article we follow Carla’s story and see further into the world of how her data is gathered and in some cases, manipulated. We consider the concept of a digital fiduciary, and how this new twist on a legal concept may help to protect our best interests. We also look at the vast power of institutional AI, and consider how a new technology, personal AI, could be based on fiduciary principles, and have our best interests at the core of personal AI, to help us navigate the world of data.
Chapter 4
A review of the history of how health data is handled and how critical that it is for it to be handled well, considering the heroic Dr John Snow, a “data detective” who took innovative action in a previous pandemic in 1854, and had significant impact. We discuss the emerging concept of a health data trust and how it could help safeguard our data yet still allow it to be used for good, including a review of some of the challenges and how we might overcome them.
Chapter 5
Community Data: exploring how data is handled in communities, in light of the rise of the so called “smart city”, considering a recent experiment by Google/Sidewalk Labs, and also looking back to the Ancient city of Thurii for insight.
Chapter 6
We explore a new concept called digital lifestreams, which reflect our personal data and also offer an opportunity to explore a fuller online identity in the form of a virtual portrait. We also explore the most precious heritage of our families and communities residing in digital artifacts, scattered in the many corners of our world in datacenters and shoeboxes: digital artifacts which are in need of gathering, protecting, curating and sharing based on our wishes. We look at the nature of data from different viewpoints, and consider its implications, so we can be better equipped to develop new systems that allow us to manage data on our own terms.
Chapter 7
We consider several proposed ways forward to pilot solutions for each of the challenges mentioned in the series, and offer a call to action for those individuals, companies and organizations who may be willing to invest time, money or other resources in the effort to build a more trustworthy web.
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