In a recent note, I discussed the challenges facing the National Health Service (NHS) in the deployment of IT across this huge health system (see: National Health Service a "Balkanized" Mess; Special Problems with IT). Now comes news that a former British politician is advocating the sale of NHS health data as a source of new revenue (see: A Former Science Minister Wants to Fund the NHS by Selling Access to Patient Data). Below is an excerpt from the article:
Now, as...[NIH] finances face increasing pressure, [Paul] Drayson, a former U.K. science minister, is on a mission to help save the government-funded NHS by selling access to patient data to drug and device companies.....Drayson founded Sensyne Health Plc, a for-profit company that’s trying to get divisions of the NHS to agree to put patient information, including DNA sequences, into a large database. Over its 71-year history, the NHS has collected records on its patients and, in recent years, launched an intensive drive to collect and use patients’ DNA data for care and research. Sensyne’s initial target is to gather information on 5 million NHS patients; ultimately, Drayson says, he would like to have access to the data on all 55 million members. According to a coming report from EY consultants, the data could be worth as much as $12 billion annually in better patient care and health, and benefit to the U.K. economy. So far, Sensyne has signed up six of the NHS’s 150 hospital divisions, known as trusts, representing about 3 million patients, with each trust receiving Sensyne shares worth about $3 million. Private companies increasingly have tapped into the NHS data—contracting with trusts for access or through companies providing access—to inform their own efforts to develop new drugs and devices. As rising costs, poorly planned expansion, and the Brexit-fueled worker flight threaten the NHS, U.K. lawmakers and patient advocates say it should be compensated for its data.
The demand for access to patient health data is insatiable. Among other things, the genetic data is being used partly for drug research by pharmaceutical companies. A broader swath of data is used to develop diagnostic and predictive analytics. I personally believe that anonymized health data can and should be sold but in a way that benefits patients rather than lines the pockets of entrepreneurs (patient data stewardship). Moreover, there also needs to be broad access to the data rather than exclusive contracts with insiders. Paul Drayson may meet this latter description.
Of great interest is the fact that Sensyne has already signed up "six of the NHS’s 150 hospital divisions, known as trusts, representing about 3 million patients, with each trust receiving Sensyne shares worth about $3 million." Much of what I now believe about the sale of patient data I have learned from the Memorial Sloan Kettering/PaigeAI scandal. C-suite executives were enriching themselves from the sale of data to PaigeAI on an exclusive basis (see: Controversy at MSK Cancer Center Regarding the Pathology Archive and Database; Some Ideas Governing Patient Data Stewardship by Hospitals). The hospital appears to have corrected many of the problems that prompted the scandal but I will monitor the situation to make sure that this has happened.
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