Session:

Own Your Experience: A path toward patient data ownership

Tuesday | September 21, 2021

1:45 PM

We demand that patients own their data. We demand that healthcare services are open source. Because healthcare is too important to be closed. The data that drives our care, the algorithms that dictates our parents care, our neighborhood’s care, our nation’s care, and the everyday services we rely on, feed on our experiences, are governed by black boxes and crooked biases, and are owned by others. It’s our health. Our very lives are at stake. We demand that patients own their data. We demand that healthcare services are open source. Because healthcare is too important to be closed. See how we, the atomic units of the health system, can bend it back to the light.

- You don’t own your health data. And you should. Neither HIPAA nor the EU’s GDPR have provisions for ownership, only access
- Health data includes more than you think. Labs and encounters are a tiny fraction of our total “data” package
- When you own your data, you control access. Our data rights should include the ability to share, update, sell, and destroy data. Yes, all 4 are ownership rights

Speaker(s):

Juhan Sonin, Creative Sandpaper, Director of the Four Directions Summer Research Program at Harvard Medical School and the Medical Director of the Brigham and Women’s Hospital Physician Outreach Program with the Indian Health Service

Moderator 1

Track:

B

Education Credits Available