Building a way for people to sell their personal medical data would help researchers create a rich database that helps solve health problems. The big catch is if it’s even possible to build such a system, and who would buy into it.
Data can help researchers and companies get valuable insights when developing therapies for cancer patients, for example. And more people means richer data. One hurdle to creating an exchange system for people to willingly contribute information is how much those individual data are worth and how that value is determined.
“What health data is worth is something we’re very much grappling with,” biochemist Piers Nash told Bloomberg Law.
Pharmaceutical company Roche Holding AG last April bought health-tech startup Flatiron Health Inc. for $1.9 billion. Flatiron is a “market leader in oncology-specific electronic health record (EHR) software as well as in the curation and development of real-world evidence for cancer research,” Roche said. Roche’s acquisition price works out to about $1,000 per record for 2 million oncology patients whose electronic health records Flatiron held, Nash said.
“What it really was was a data grab,” said Nash, founder of Sympatic, a start-up protecting data rights to enable more effective use and secure sharing of health data.
Another hurdle to creating such a system is who to entrust with those very personal data and who will build a framework to allow that exchange.
“The health-care companies neither have the scale nor the capability to do that,” Jason Crites, IBM Watson US Healthcare life sciences ecosystems executive, told Bloomberg Law. “But they need to lead the way [on] what the requirements are and this is indeed a system that is going to enhance trust and not destroy it.”
“Trust is essential for any kind of market,” Charlotte Tschider, DePaul University law professor who focuses on medical devices and cybersecurity, told Bloomberg Law. “If people don’t trust, they don’t participate.”
A secondary market worth more than $100 billion already exists with companies buying, selling, and trading data that have been stripped of the individual’s identification, said Nash.
“Savvy companies have figured out how various ways to sell that data every day,” Nash said. Those entities include insurance companies with claims data, such as UnitedHealth Group-owned Optum Health, McKesson Corp., Apple, IBM, and the U.S. Department of Veterans Affairs.
Apple already provides a model for creating an exchange. People under the iTunes model pay for music, the creator gets a cut, and Apple gets a brokering fee.
“And at no time does Apple ever believe that they are the owner” of that file, Anil Sethi, CEO of Ciitizen, a start-up helping patients collect, organize, and securely share their digital health information.
“One can imagine a day where patients are aggregating their information because they’re the right people to aggregate it,” Sethi said. Sethi’s consumer health-tech company Gliimpse in 2016 was bought by Apple where he became Apple Health director.
Any such market is three to five years in the future, Sethi told a session of the Precision Medicine World Conference in Silicon Valley.
Hank Greely, director of Stanford University’s Center for Law and the Biosciences and chairman of the Center for Biomedical Ethics steering committee, has his doubts for good ways to monetize such data while protecting patient privacy.
“My own sort of grumpy conclusion is that there is no way to protect privacy in situations like this. People who want to do it will just have to risk the privacy of their health data,” Greely told Bloomberg Law in a Jan. 27 email.
“As to compensation, figuring out a royalty kind of system seems very hard to me because of the difficulty of assigning cause/contribution to any particular person’s data … and any flat compensation would likely not be very much,” Greely said.
“Not everything works better when we put dollar (or in the case of data, cent) figures on it,” Neil M. Richards, a law professor at Washington University in St. Louis, said in a Jan. 25 email.
“Rather than making sure that data brokers pay as they go or provide micro-payments to people whose data they use at some market rate that is likely under-compensatory, we should make sure data brokers can be trusted to act in the public interest,” said Richards, who focuses on genomic science and the law and ethics of human information management.