Editor’s Note: This is the fourth blog post in a series in which Leigh Burchell shares the lessons learned from conversations with industry thought leaders during the Virtual ACE Conference Oct 6-8. Watch Patient Privacy, Healthcare and Big Data here.

As a moderator participating in last week’s Virtual Allscripts Client Experience (ACE), I’m focusing this blog post on what ended up being a fascinating interaction with Senator Bill Cassidy, MD, who represents Louisiana in the U.S. Senate.

During Senator Cassidy’s visit to the ACE conference, we opened the conversation by discussing the tension between the promise of big data and privacy, and the Senator personalized it with a story of caring for a patient during Hurricanes Rita and Katrina. That man relocated to Oklahoma City but was still able to receive his interferon and chemotherapy because his data was accessible electronically to his new physician, who happened to be an Allscripts client.

Senator Cassidy described that as an early microcosm of the intersection between privacy and health data, and he in quick order followed it with two other examples of where big data bumps into privacy concerns in the real world.

So what is Senator Cassidy thinking about on this topic? He mentioned the possibility of:

• patient-fitness app data being used by payers to choose which members to accept or not;
• data from patient wearables being considered by employers who want to avoid the costs associated with an employee who is deemed to be at higher risk of Parkinson’s; and
• the risk of COVID-19 data being monetized (particularly when entered into contact tracing apps).
• his examples prompted for me the possibility of a provider in a risk-based payment model carving out a patient whose data from wearables or other apps indicates their costs and outcomes might soon head in the wrong direction.

We also discussed the fact that once patient data is out there, it’s very hard to pull back, and patients frequently aren’t aware of where their data is going. Terms of Use are not often understandable by the average consumer, and many aren’t aware that their smartwatch or fitness tracker company is selling and using their data for a variety of purposes. In fact, Senator Cassidy has co-sponsored the SMARTWATCH Data Act with Senator Jackie Rosen (D-Nevada) to address the issue of data from wearables falling into the gaps left by HIPAA.

Other topics of conversation included when Federal lawmakers might tackle the challenge of drafting a centralized framework for the health data that isn’t currently protected by legislation, as well as the NIH’s “All of Us” initiative. It was fascinating to hear his opinion that some of the profit that comes from drugs developed based on that genetic database should be returned to those who donated their DNA to the effort.  He mentioned the Henrietta Lacks historical example and asked, “Isn’t our genetic code the ultimate intellectual property that should be protected?”

Truly, it was a fascinating conversation and heaven to a wonk like me who can happily talk policy and “What If” scenarios all day. Definitely worth a listen.