Duke Health draws transparency criticism over patient data deal with tech company

For each of Duke Health’s hundreds of thousands of patients, the institution keeps an exhaustive record of valuable health data.

Every medication they’ve been prescribed, every blood pressure reading or temperature recorded, every diagnosis given, every doctor’s note and images from every MRI or X-ray are all cataloged in Duke’s electronic medical database.

Earlier this month, Duke partnered with a Massachusetts-based machine learning company, nference, to remove identifying information from this trove of patient data and ultimately build a library that is easy for researchers to analyze and search.

Nference has already begun marketing access to this database to pharmaceutical companies, which could generate revenue for Duke, said Dr. Jeffrey Ferranti, Duke Health’s chief digital officer, in an interview with the N&O.

Giving pharmaceutical companies access to this data could speed up medical discovery in the long run, by allowing industry researchers to quickly sift through hundreds of thousands of data points, rather than run costly and time-intensive studies on patients.

But several bioethicists interviewed by the N&O said Duke has not been transparent enough with patients about how they plan to use their de-identified data.

“There is useful research here, I’m not against it,” said Arthur Caplan, founding head of the Division of Medical Ethics at NYU Grossman School of Medicine. “You just want to make sure you don’t lose public trust in trying to pursue it.”

Building health care databases is a burgeoning industry

Typically, health information is tightly protected by HIPAA, which prevents health systems like Duke from sharing or selling the data.

But when health information is scrubbed of identifying information — like names, dates of care and ZIP codes — it is no longer protected by those laws and hospitals are legally free to share or sell the information.

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