Give up your Data to Cure Disease

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. More than 80 percent of office-based doctors, including me, use some form of E.H.R. These systems are supposed to make things better by giving people easier access to their medical information and avoiding the duplication of tests and potentially fatal errors.

Yet neither doctors nor patients are happy. Doctors complain about the time it takes to update digital records, while patients worry about confidentiality. Last month the Association of American Physicians and Surgeons went so far as to warn that E.H.R.s could “crash” the medical system.

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.

Medicine is famous for serendipity — scientists coming across important findings when they least expect them or aren’t even looking. I’ve often said that we may have all the drugs and therapies we need already to prevent, treat or cure most ailments, but we don’t know which ones can be used on which conditions and at which doses.

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.

The researchers are now preparing follow-up clinical trials of ovarian cancer patients. My guess is they will confirm the connection.

This information was lying in plain sight, no invasive procedures or testing required. We could have found it years earlier if we had had the data.

Here’s another recent example. In 2015, researchers at Stanford University and the Houston Methodist Research Institute analyzed more than 16 million clinical documents from some 2.9 million patients and discovered a connection between prescriptions of a certain kind of heartburn drug and heart attacks. One in 15 Americans takes these drugs, the so-called proton pump inhibitors (P.P.I.s) such as esomeprazole (Nexium), omeprazole (Prilosec) and lansoprazole (Prevacid). The study found that they can increase your risk of a heart attack by about 16 percent, regardless of whether or not you have an existing heart condition.

This conclusion came from simple data mining, and confirmed earlier research conducted in 2013 and published in the journal Circulation indicating that P.P.I.s could potentially lead to long-term cardiovascular disease by changing the lining of blood vessels. Patients who were prescribed another type of heartburn drug, however, had no increased likelihood of heart attack.
I get that patients are nervous about releasing their health records. Studies have shown that even anonymous strings of DNA data can be linked to individuals. Patients understandably don’t want their acquaintances and employers to know all their private health information. But we cannot let these fears suppress the powerful insights medical data can offer us. When I explain to my own patients what can be done with their information for the greater good in research, nobody has ever said to me, “Don’t use my data.”

We all go to a machine on the street where we insert a plastic card and cash comes out; we log into our online accounts to check our balances and pay bills; and we give credit card numbers that contain a key to our financial information to retailers without a second thought. But if I asked you to put your de-identified personal health information online, or share it and perhaps some bio-specimens with people other than your own doctors, you might panic. “Health data is not the same as financial data,” you might say.

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.

We also must block attempts to discriminate based on health information for work or other pursuits with continued legislation, and portray those who participate in the sharing of health data as heroes. In fact, they are heroes: They are part of tomorrow’s cures for themselves and their children. We also need to revisit the cumbersome and obsolete privacy rules enacted by the Health Insurance Portability and Accountability Act of 1996 to make it easier for patients to participate. One idea is to establish a trusted middle “broker,” such as a dedicated nongovernmental agency, that can ensure that every effort is made to keep records anonymous before their release for research studies.

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.
David B. Agus is a professor of medicine and engineering at the University of Southern California and the author of “The Lucky Years: How to Thrive in the Brave New World of Health.”

Source: http://www.nytimes.com/2016/02/07/opinion/sunday/give-up-your-data-to-cure-disease.html?_r=0