A Former Science Minister Wants to Fund the NHS by Selling Access to Patient Data

(Bloomberg Businessweek) -- Paul Drayson, born blind in one eye, has never forgotten the treatment he received as a child from England’s National Health Service, which provides free care to all residents. Now, as the health program’s finances face increasing pressure, 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. “This country has to pay its way in the world,” he says of the U.K. “How the NHS works with the global life sciences industry is key to the health of the nation.”

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. “Our issue is that the IP value of patient data is being drained away by Big Tech,” says Parry Mitchell, an independent member of the House of Lords. “I wouldn’t call it a concern—it’s an obsession.”

Governments, drugmakers, and hospitals are racing to amass and exploit patient data. U.S.-based Intermountain Healthcare just announced a partnership with Amgen Inc. to map and study the genomes of half a million patients. Israel is spending $300 million to commercialize its patient health records. And companies such as Nebula Genomics broker individual patients’ DNA data to buyers in the health industry.

Drug companies are betting that patients’ records documenting symptoms and side effects will help reduce the need for costly human studies, thus lowering the estimated $2 billion required to bring a new drug to market. One of Sensyne’s more prominent customers is German-based Bayer AG, which has a large U.K. research facility. Meanwhile, entrepreneurs see apps to be developed, devices to be designed, surgery techniques to be refined, and post-operative protocols to be optimized, all based on analysis of patients’ records. “The value of the NHS is enormous,” says Kari Stefansson, who founded Iceland’s Decode Genetics, now a unit of Amgen, a quarter of a century ago to look for clues to disease in genes and patient histories. “Just the familiarity and comfort with these huge amounts of data are making more discoveries possible,” he says.

Protections on patient information became tighter with the introduction of new privacy laws last year. Polling shows that U.K. residents are willing to share data if it’s used to improve care, but they’re wary it will get into the hands of companies that they fear won’t have their best interests at heart. And any citizen has the right to block the sale of his or her individual data.

Some of the NHS’s efforts to collaborate with companies have gone awry. Five years ago, U.K. patients were shocked to find that millions of medical records they thought were for biomedical research were in fact shared with insurance companies.

Drayson promises to safeguard the data Sensyne collects. Researchers are allowed to analyze it only within a safelike, reinforced, “air-gapped” room that has no internet wires in or out, and thus no risk of viral attack. Sensyne works with trusts and a data watchdog—called a Caldicott Guardian—to oversee privacy measures and determine whether proposed research projects have the potential to provide value for patients. The company’s clients don’t see or take the data: They only see the results of the analysis.

Drayson orchestrated the sale of vaccine maker PowderJect to a U.S. rival for about $800 million in 2003, when he served as the company’s chief executive officer. After the sale, he landed an appointment to the House of Lords and served in the government for five years, including a stint as science minister from 2008 to 2010. A lifelong car nut who drove as an amateur in the 24 Hours of Le Mans in 2009 and 2010, he started Drayson Racing Technologies to develop electric racing vehicles. After breaking his back in a 2014 crash, he left the racetrack and founded Drayson Technologies, a medical device company.

Turning medical records into cash could prove to be Drayson’s biggest challenge yet. “For the NHS to continue delivering great care in the future, it’s got to meet its challenges,” he says. “How can it use that data to improve care for patients and strengthen and fund the NHS? It’s really important.”

To contact the editor responsible for this story: Dimitra Kessenides at dkessenides1@bloomberg.net, Rick Schine

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