About the authors: Mad Price Ball and Bastian Greshake Tzovaras lead Open Humans as Executive Director and Director of Research, a nonprofit project dedicated to empowering individuals and communities around their personal data, to explore and share for the purposes of education, health, and research. We have other diverse work in open science, data technology, digital and research ethics, health and humans subjects research, and citizen science. We’ve been thinking about this for a while now: What can be built to make collaboration a reality in self-research?
Gary Wolf’s call for enabling individual discovery describes a vision we also share: we believe in the untapped potential of people studying themselves. Answering questions relevant to their own lives, with motivations ranging from chronic disease to curiosity. We encourage you to read what he’s written: “How to Make 10 Million…
by Gary Wolf
Thank you to the many, many people who sent us private and public feedback on this post. In response to your comments and some revised thinking among our collaborators, I’ve made one substantive change. A recently published paper by Nils Heyen uses “personal science” rather than “everyday science” to describe the kind of self-research discussed below. His paper is convincing, and I’ve replaced everyday science with personal science throughout the essay below. See: From self-tracking to self-expertise: The production of self-related knowledge by doing personal science.
This device has one button. When you press the button, it records the time. It isn’t necessary to set the clock, which is always accurate. Connect the device to your computer and it opens as a drive. The record of your button presses is there as a file on the drive. This device is useful because it provides a convenient way to record accurate observations in daily life. Unlike a mobile app, it can be used discreetly, privately, and won’t go obsolete. Self-trackers and clinical researchers are already using it today to learn about triggers of PTSD, restless leg syndrome, and allergy. …
All of Us is based on the principle that all the data we get from participants we give back. This is not a research program, it’s a research infrastructure.
— Steve Steinhubl
Steve is a senior investigator on one of the most far reaching, government funded health research projects in the world, the “All of Us” initiative to build infrastructure for 1 million participants. His talk outlines some of the goals and challenges they currently face and describes how the All of Us initiative connects with the cultural and social innovations coming from the Quantified Self community.