Patients are the Real Scientists by Joyce Lee

From the Quantified Self Public Health Symposium

April 8, 2016

“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.

Related Posts

Self-Registration: A person-centered approach to recording symptoms, observations, and outcomes.

Gary Wolf

August 11, 2020

If we want to know about typical and atypical symptoms of COVID-19, why wait until people show up at the doctors’ office or emergency room and then ask them to tell us: When did you first feel sick? It’s reasonable to want to build on top of our everyday tools, and track the development of the disease as it occurs. I want to underline what tends to be forgotten in our product-obsessed culture: these tools are not simply measurement instruments and wearables; they include the social and cognitive tools individuals are using to understand and manage their own health.

We Have Posted The Conference Program for QS18!

Gary Wolf

August 19, 2018

“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...

Announcing Blood Testers: A Collaborative QS Project

Azure Grant

August 23, 2017

Quantified Self announces a collaborative project for self-testing blood lipids: “Blood Testers.” The project’s long-term goal is to advance progress in self-directed research by better understanding what makes these types of projects succeed or fail. By working with a diverse group of participants, QS hopes a create an example of discovery that is informed by ‘expert’ individuals, highly participatory, and open access.

Series
Blood Testers