2:00 Why do people need access to their own healthcare data?
14:00 We’re in a new era where patients should be able to download data from their doctor’s portal.
17:00 Why does HIPAA (the PORTABILITY Act) often present as an obstacle to data sharing?
28:00 How do we ‘democratize’ information in a way that isn’t just for the Silicon Valley insider? “I believe in giving people agency but I also believe in giving people support.”
30:30 What are the risks of using health data outside of the clinical space? “We need federal privacy regulation.”
Deven McGraw, lead for Data Stewardship and Data Sharing at Invitae, joins Laura to discuss how government and industry can best secure your right to access your own health data while keeping it secure from unwanted exposures. Deven's broad range of experience makes her the person to answer those burning questions about how to keep our data safe - and accessible. She came to Invitae after many years working on health privacy and security within government and a stint in Silicon Valley as co-founder and Chief Regulatory Officer for the start-up Ciitizen, a platform for patient control of health information subsequently acquired by her new employer.