Health Data Should Belong to Patients, Topol Argues

The digital revolution’s merging of medicine with high tech has unleashed massive amounts of data about the most intimate details of our life — what we ate, how far we walked, how fast our heart beat. As a result, what constitutes health data is no longer so easily defined. Neither is how the information is used. With rise of machine learning, those questions are becoming increasingly urgent, especially with the move of high tech companies into the clinical sphere, according to health data transparency advocate Dr. Eric Topol.

The first step is to put the power over those decisions in the hands of the people who are producing 2.5 quintillion bytes of data every day, according to Topol in a new commentary in Nature co-authored by John Wilbanks, chief commons officer at Sage Bionetworks, a biomedical research nonprofit in Seattle. The commentary, tellingly, is headlined, “Stop the privatization of health data.”

“The digital health revolution only works if we place the patient in control of how and where their data is shared,” they wrote. Topol is the director of the Scripps Translational Science Institute, and chief academic officer of Scripps Health in San Diego. He has written about the issue of patient access starting with medical records. But the issue has reached a new urgency, he and Wilbanks argued, because of the increasing use of sophisticated programs to understand the treasure trove of machine-readable data...