Most Quantified Self projects are driven by individual questions, but since 2012 leaders in the Quantified Self community have been working closely with public health experts, policymakers, and research scientists to advance discovery through increasing access to data.
In this first edition of the CCS series we will explore the requirements of self-tracked health data for it to be both safe for an individual as well relevant for group analysis. How can we share our data in a way that protects our privacy and individual agency while supporting collaborations with clinical and public health research?. What are the appropriate models for social and ethical governance of highly detailed data shared by individuals?
Gary Wolf, international pioneer of QS, will reflect on this topic from a global perspective. Martijn de Groot, co-founder and former director of QS Institute, will talk about the position of QS in The Netherlands. Both are authoring a white paper on Everyday Science (sponsored by the Robert Wood Johnson Foundation), to be released soon. Andre Boorsma, TNO-data scientist, distinghuishes different views on so-called “Digital Health Data Market places” as enablers of data sharing, with a special focus on the Holland Health Data Co-operative. Gaston Remmers, co-founder and director of Foudation My data our Health introduces the workshop.
The interactive debate aims to deliver clarity about the question:
What conditions should be met for you to share your self-collected health data for the common good?