Give Up Your Data to Cure Disease

David B. Agus in The New York Times: “How far would you go to protect your health records? Your privacy matters, of course, but consider this: Mass data can inform medicine like nothing else and save countless lives, including, perhaps, your own.

Over the past several years, using some $30 billion in federal stimulus money, doctors and hospitals have been installing electronic health record systems. ….Yet neither doctors nor patients are happy. Doctors complain about the time it takes to update digital records, while patients worry about confidentiality…

We need to get over it. These digital databases offer an incredible opportunity to examine trends that will fundamentally change how doctors treat patients. They will help develop cures, discover new uses for drugs and better track the spread of scary new illnesses like the Zika virus….

Case in point: Last year, a team led by researchers at the MD Anderson Cancer Center and Washington University found that a common class of heart drugs called beta blockers, which block the effects of adrenaline, may prolong ovarian cancer patients’ survival. This discovery came after the researchers reviewed more than 1,400 patient records, and identified an obvious pattern among those with ovarian cancer who were using beta blockers, most often to control their blood pressure. Women taking earlier versions of this class of drug typically lived for almost eight years after their cancer diagnosis, compared with just three and a half years for the women not taking any beta blocker….

We need to move past that. For one thing, more debate over data sharing is already leading to more data security. Last month a bill was signed into law calling for the Department of Health and Human Services to create a health care industry cybersecurity task force, whose members would hammer out new voluntary standards.

New technologies — and opportunities — come with unprecedented risks and the need for new policies and strategies. We must continue to improve our encryption capabilities and other methods of data security and, most important, mandate that they are used. The hack of the Anthem database last year, for instance, which allowed 80 million personal records to be accessed, was shocking not only for the break-in, but for the lack of encryption….

Medical research is making progress every day, but the next step depends less on scientists and doctors than it does on the public. Each of us has the potential to be part of tomorrow’s cures. (More)”