It is one of health care’s most vexing quandaries: Patient data must be shared to develop more effective medicines and artificial intelligence tools, but there’s no way to share it without violating privacy and basic data rights.
Or is there?
A fresh crop of companies is building a new data economy that enables the shared use of personal health information while enforcing ironclad privacy protections. They are not a monolithic group: each one uses its own methods and technologies, serves different customers, and is motivated by distinct problems and personal philosophies.
But they share a belief that the nation’s system of exchanging health data — which relies on buying and selling personal information without patients’ knowledge or explicit consent — is fundamentally broken. Some spoke of health data as an extension of personhood, or a digital self — not a commodity to be traded for profit.
“We don’t like to think about personal data as being owned, because we don’t think people can be owned,” said Heather Flannery, founder and chief executive of Washington, D.C.-based Equideum Health. “We think analogies that conceive of data more like a person’s labor than property are more ethically appropriate.”
To ensure data are kept private and secure, these companies are erecting firewalls around health information that allow it to be used for clinical research and testing without exposing patients’ identities or allowing their data to be traded between third-party owners.
Here’s a closer look at the entrepreneurs and technologies…Read more on STATnews.com