How Blockchain Can Make Patients More Valuable
In 2012, NFL Hall-of-Fame linebacker Junior Seau tragically committed suicide by shooting himself in the chest. He did so to preserve his brain so that his condition, chronic traumatic encephalopathy (CTE), could be further studied. If studying his brain leads to a highly profitable cure to CTE, should Mr. Seau’s family benefit financially?
Estate planning has helped transfer to surviving family members value in the form of cash, real property, song royalty rights, patents, and so much more. Does a brain with CTE have transferrable value? Not yet. Without a robust market to exchange healthcare data, its value gets trapped by companies that aggregate de-identified healthcare data, package it, and sell it.
Machine learning and sophisticated algorithms bring hope to finding medical cures that have thus far been elusive. Without patient data, machines cannot learn. And although this data originates with a patient, it is mainly corporations that get to sell it to third-party researchers.
The debate over the rights to this data is nothing new though. One of the most famous cases related to an individual’s medical data involved Henrietta Lacks, who in 1951 was being treated for cervical cancer. Her unique tumor cells were, without her consent, given to researchers – leading to a host of landmark medical discoveries, including the polio vaccine.
The matter garnered considerable attention, ultimately resulting in The National Institute of Health (NIH) stepping in to develop a framework to protect Mrs. Lack’s privacy. The framework did not address the value of her cells.
Recently, The NIH released a new report, Strategic Plan for Data Science (see www.datascience.nih.gov) on how to handle the trove of existing – often fragmented – data related to biomedicine.
The report sets out its goal that “all data-science activities and products supported by the agency adhere to the FAIR principles, meaning that data be Findable, Accessible, Interoperable, and Reusable.”
Lacking a market for the data behind the data science, “value” was once again not addressed.
Data already in existence can be used to teach algorithms and improve medicine in ways inconceivable just a few years ago. Indeed, the NIH report notes that reams of data gathered by the Veterans’ Administration holds great promise to find cures to help disabled veterans. But patient data yet to be collected will also be key to research and new medical discovery. The more unique the condition, the more valuable that individual’s data becomes to cracking scientific codes.
To the extent profits result, who should benefit: The Government, Non-Profits, For-Profits, Health Systems, or the parties who actually “own” the data: The patients themselves or the families they leave behind?
The blockchain-powered “decentralized” movement may finally make the latter possible.
Brian S. Kern, Esq., Partner, Acadia Professional.