Met at Esther's conference; the patient-data pioneer whose work is this record's subject matter from the patient side
This is Jonathan Hare's account, with its provenance shown. The person or organization named has not yet claimed or corrected it.
Jamie Heywood — met at Esther Dyson's ~2006 conference — founded PatientsLikeMe with his brother Ben, and before it the ALS Therapy Development Institute, built around his brother Stephen's disease. In this record he stands for the patient-side origin of the health-data-sharing question the architecture answers from the infrastructure side: PatientsLikeMe proved patients would share their data for collective benefit a decade before the institutions figured out how to let them do it safely. The direct thread beyond the conference is Jonathan Hare's to add.
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