“Patients are doing experimentation every day just to live with their disease.”
Joyce Lee is a pediatric endocrinologist at the University of Michigan and a leader in developing methods of collaborative clinical research with patient communities. Her current focus is on learning from the participants in CGM in the Cloud, an online group that supports participants in a remarkable DIY data project called Nightscout. Nightscout and CGM in the Cloud help people flow their blood glucose data out of their monitors so they can do new things with it, such as set special alarms or share the data remotely with caregivers.
Here, Joyce describes why patients, and patient communities are leading the way in the development of new kinds of science, experimentation, and models of communicating knowledge.
Watch Joyce’s talk on Medium.