The problem of “dark data” in healthcare isn’t just a feel-good empowerment thing, but a structural issue that leads to miscommunication and extra friction, different players in the entire healthcare system not being able to collaborate with each other, and just major missed opportunities all round. And yes, it also leads to lack of empowerment for patients, not to mention doctors too (who often have less than 30 minutes on site to do their jobs).
But we already know all that. What’s not clear is WHY and HOW is this the case, when the very point of HIPAA — the Health Insurance Portability and Accountability Act (of 1996!) — is to make data portable, not private. That is, IF patients know to ask for it… and can easily get it. So what if we could have a sort of permissioned “permissionless innovation” for healthcare data, not only bringing all that dark data to light, but more importantly — borrowing from the history of internet innovation — letting all sorts of expected and unexpected uses be built on top as a result? What happens when data and entities can talk to each other (à la APIs) through patients at the center of the circle of data?
From the Dr. Google problem (or opportunity!) to clinical trials and even the opioid crisis, we — Susannah Fox (former CTO of the U.S. Department of Health and Human Services); Anil Sethi (CEO and founder of Ciitizen); and a16z bio general partner Vijay Pande; in conversation with Sonal Chokshi — explore all this and more in this episode of the a16z Podcast. Let there be light!