Who owns patient data?

PARCA eNews – June 27, 2019 – That was the topic of a panel discussion on the ethical issues of Artificial Intelligence in radiology at the recent SIIM 2019 conference, held June 26-28.

At the heart of the discussion is the need for patient data for development of algorithms for artificial intelligence. AI requires data, a lot of it, consequently vendors developing proprietary AI solutions for healthcare are beginning to pay for it and hospitals are more than willing to sell de-identified patient data. The problem with imaging data is whether it can truly be de-identified.

For example a CT scan of a patient’s head can be reconstructed into a 3D image, that can easily make the patient identifiable. Panelist Adam Prater, MD, MPH of Radiology and Imaging Sciences at Emory University argued that such concerns were overblown and that vendors need data to make advances in AI for radiology and healthcare needs vendors to make progress for healthcare to advance.

Until recently most AI development was being carried out in academic institutions, which used de-identified patient data for research. Such research is published and made available to other researchers. More recently, however, commercial companies are developing proprietary applications for AI using purchased patient data, and the results of their development efforts are not shared in order to protect the technology from competitors.

The question the panel came to then, is who owns patient data? If patient information is used to advance medicine, that is one thing, but when it is used to provide a company with a competitive advantage, should hospitals alone profit from that data or should patients themselves be consulted?

Prater argued the business case saying, "Healthcare needs vendors to make progress. Every other industry has artificial intelligence," he said. "We’re super behind and we need vendors for progress. Healthcare can’t solve everything by itself.”

Patricia Balthazar, MD and resident at Emory argued that patients have a basic right to know if their patient information is being sold by their providers.

"We said that we should involve patients in decision-making, and we have consents for every procedure," she said. "If the patient is having an imaging study, they should know that you are selling the image to someone else."

Other panelists included: Nabile Safdar, MD, MPH from the Department of Radiology at Emory University, Lindsey Shea, MD, MS, resident at Indiana University School of Medicine, Dorothy Sippo, MD, MPH, CIIP from Massachusetts General Hospital, and Alexander Towbin,, Assoc. Chief of Clinical Operations and Informatics at Cincinnati Children’s Hospital Medical Center.

Source: SIIM Educational Session: Ethics of Imaging Informatics, and HealthImaging report by Matt O’Connor: Patient and vendor perspective on ethical AI in radiology