Cassidy Addresses “Tension” Between Health Data Privacy and Responsible Use

February 17, 2021
Mary Caffrey

Mary Caffrey is the Associate Editorial Director of AJMC/Managed Care for MJH Life Sciences. Her editorial responsibilities include Evidence-Based Oncology, Chief Healthcare Executive, and Managed Healthcare Executive.

During Academy Health's Datapalooza, the Louisiana senator said many consumers are unaware of ways in which the personal data collected on wearables or smartphones can be used.

A smart watch with an app that encourages a 45-year-old man to get his steps in every day could motivate him to stay in shape. But that same device could track whether the man gets up every night to use the restroom, and that could signal an enlarged prostate.

Who gets access to this data? Who decides how it is used? These are issues of growing concern to policy makers, and our laws already lag behind what technology can do, said US Senator Bill Cassidy, R-La., a physician who offered Wednesday’s keynote during Academy Health’s Datapalooza and National Health Policy Conference.

Many consumers embrace wearables or smartphone apps that record everything from steps to calories burned or even menstrual cycles, which could help women trying to get pregnant. But those apps may be monitoring other things, “which you may not be aware of,” he said. “There is that tension.”

“I would argue that right now we’re behind the curve in addressing this tension,” Cassidy said, noting that the FDA currently does not regulate low-risk “wellness” technology, but does regulate technology with a medical function.

FDA “specifically regulates products, not systems,” he said. If wearables feed data into unregulated systems that health systems, retailers, or employers can use to build profiles of people, how should policy makers respond?

Already, he said, employers have the ability to learn about a prospective hire’s interest in certain medical conditions. If a person reads frequently about HIV or Parkinson’s disease, even if for a relative or friend, Cassidy said, a future employer can find that out, and perhaps decide the candidate is not a good risk to add to the health plan.

“I was told by an employer that he has access to such information when headhunters bring resumes to him,” he said. So, this not an issue for the future—it’s happening now. “All of which raises the question of how do we protect health data privacy?”

Cassidy said he is working on legislation with US Senator Maria Cantwell, D-Wash., that would put safeguards on apps that are used for public health purposes, such as contact tracing. Apps that could give individuals an “immunity passport,” signaling they have either had coronavirus disease 2019 (COVID-19) or been vaccinated could be used to allow stadiums to reopen or to let restaurants and music venues to reach capacity. But these apps raise serious privacy concerns.

“They have to reopen,” Cassidy said of music venues, the day after his home state saw Bourbon Street empty on Mardi Gras, which brought $1 billion to the New Orleans economy in 2020. An immunity passport, he said, is a tool that “shouts from the mountaintops [with] potential benefits to the economy and to personal freedom.”

The challenge is “to balance this tension between the great promise of information and the great threat,” which he said “has to be reconciled. …We do we need good public policy to do so.”