Using Patient Data in Research: Balancing Benefits and Risks

Using Patient Data in Research: Balancing Benefits and Risks

John Wilbanks, Chief Commons Officer of Sage Bionetworks, participated in the panel “Using Patient Data in Research: Balancing Benefits and Risks.” The panel took place during Milken’s Institute’s Future of Health Summit 2019.

We are capturing, tracking, and creating more data than ever about our lifestyle and health. More and more companies hold our data, which we sign away by indicating that we’ve read extensive privacy policies, when few of us actually have. And there are major gaps, loopholes, and complexities in the regulations that protect our data. Yet, when put to good use, these masses of data might help us manage our health, help providers understand the patient experience, and help researchers glean new insights about disease and biology. What risks exist when companies carry so much consumer data? How can good practice and regulations mitigate these risks? Our panel of experts will discuss these issues and lead a conversation about how we can shift towards an environment where health data is used to empower patients, while also being used to glean new insights for research and move the field forward.

Erin Mershon
Senior News Editor, STAT


Dawn Barry, President and Co-Founder, LunaDNA

Andrea Coravos, Co-Founder and CEO, Elektra Labs

Deven McGraw, Chief Regulatory Officer, Ciitizen

Pamela Powers, Chief of Staff, US Department of Veterans Affairs

John Wilbanks, Chief Commons Officer, Sage Bionetworks