Give Up Your Data to Cure Disease

Feb 6, 2016

Photo credit: Antti Uotila

By David B. Agus

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.


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4 comments on “Give Up Your Data to Cure Disease

  • To quote Benjamin Franklin’s famous quote.

    “Those who surrender freedom for security will not have, nor do they deserve, either one.”

    I don’t trust people who sacrifice other people’s freedoms for “The greater good”.,

    The one very obvious thing that doesn’t get mentioned is why medical confidentiality is important.
    It is because it is necessary to ensure that patients are honest with their doctors.

    There is also another delusion in the article, the Data Security Delusion. If you believe that data can be held securely on a computer then read The Art of Deception by Kevin Mitnick and you won’t believe it again. Any system open to humans is vulnerable because of the humans.



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  • I agree with rationalmind.

    I will go further: Those who petition citizens for the surrender of their liberty, however small in portion, in order to support The Greater Good misunderstand The Greater Good.

    We come to the greater good by being persuaded, not by being coerced.

    We do not need to ‘get over it’ we need to be reassured, protected and encouraged.

    EHRs have the potential to offer wicked people new crimes. EHRs anonymized have the potential to grant benefits, but my data is a part of me – ask first, and you’d better ask nicely.

    Peace.



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