Who's Your Sugar Data? / by David Driscoll

Patients must own their personal health data or they will lose the most precious asset in healthcare and possibly their future.

I hate to be the voice that repeats what others are saying; however, as was stated in the Wall Street Journal and has been retweeted in the digital health echo-chamber: ”Data is the currency of healthcare” and it is liquid. Liquid gold. It can be repackaged, repurposed, and traded for big money.

As a doctor on the front lines of this new medical data world, I’ve been hit with the cold realization that the data being traded and sold is collected and created by doctors, and provided by patients. Simply put, the patients generate the data and the doctor’s role is to collate, codify, and create meta-data. Doctors synthesize the data presented and generate more data (diagnosis codes, treatment codes), which we then enter into the electronic medical record machine. Let’s be clear, that little EMR machine is a Trojan horse; and the data collected defies gravity and heads straight up to the cloud where it’s later de-identified and sold out the backdoor.

The image that continues to torture my imagination is an army of physicians and clinicians running from room to room on the proverbial hamster wheel of medicine, sending data up to the cloud where nymphs with crystal goblets of champagne and data/analytics CEOs are bathing in hundred dollar bills, earned on the backs of the core data contributors: the patients. While these so-called “sugar datas” mint endless cash, doctors are told they can expect decreasing payment for the foreseeable future, and the patients unknowingly give away their assets for free.

Encyclopedia Britannica is a cautionary tale in this instance—they had all the data but did not understand its value when digitized. Wikipedia ate their lunch.

We need to get our heads out of the sand. Everyone and their brother wants to own patient data: hospitals, plans, EMR’s, pharmacies, etc. We doctors have the unique position of talking to our patients everyday. We can work together with our patients and build a movement to combat the status quo, help patients collect their health data, and alter the course of history; but we have to act quickly.

Imagine a world where doctors and patients come together to create a Bill of Health Data Rights. Let the use of data be agreed upon up front and with consent by the parties that generate the data. I can foresee a world where patients are data donors, much like organ donors, so long as their information is used solely for research. I can also imagine a world where one can copyright their data and sell it to whomever they want, with digital rights management in place to ensure royalties and annuities.

Doctors need to revisit their contracts with payers and revisit the ‘who owns the data’ clause. Data is power. Big data is big power. We need transparency in the digital health movement. Patients should know what data is being collecting from them and, if it’s being sold for a profit, they should get paid for it.

-Jordan Shlain, M.D.

Dr. Jordan Shlain is an American physician and entrepreneur. A practicing primary care physician and the chairman and founder of Private Medical, a family office for health and medicine, and HealthLoop, a cloud-based clinical engagement platform, he lectures on subjects related to public policy, economics, and new models of delivering health care. He is also an editor for Tincture.