In the debate about data privacy, we may overlook enormous social benefits.
When reflecting upon the security and privacy of EHRs, I recall an analogy that a political science professor in college once used in a lecture. He was trying to articulate the difference between a liberal and a conservative. When asking a “conservative” about what they thought about her mom, she would reply in with a fear-based frenzy, “I love mom, she can do no wrong. Ever.” A “liberal”, on the other hand, would respond “I love mom, but I understand that she is also human and can make mistakes. I still love her but acknowledge that she, like anyone else, can also be wrong at times.”
The ‘conservative’ is much like those in the camp that relentlessly defending privacy in an attack against a newly coined term “big data”. They are so tied to the idea of personal privacy, that they overlook the potential pitfalls of their ideology in the advent of internet-based technology that gathers a large amount of personal information; data that can potentially transform life in a positive way. A liberal understands that while protecting privacy is important, in theory, circumstances may change and reshape our understanding of why certain ideologies were initially formed. They are more likely to let go of the obsolete in favor of new ideologies that may have a positive effect on society because old theories may not always be right.
An excellent example of personal information being used for good is Netflix’s product recommendation algorithm. Using a sample of data, the streaming movie service can determine what other movies one might enjoy based on “grades” they’ve given to previously viewed movies. This feature has made my experience as a user so much more enjoyable, and frankly, it’s less work. Gone are the days of searching repeatedly guessing at titles that sound interesting. Now, the service makes recommendation based on a collecting data on what I’ve liked before. Done. Easy.
Is the sharing of anonymous, de-identified health information is much different? Identifiable patient data is exquisitely sensitive and is protected as such. But imagine a world where I can find out my life expectancy or ailments I am susceptible to based on the genetic data of my parents, for instance, and other algorithms utilizing profiles of patients like me. Hello preventive medicine!
You might enjoy this TechCrunch video, hosted by Sarah Lacy, which discusses the positive effects of data aggregation with industry heavyweights Reid Hoffman, CEO of LinkedIn and Tim O’Reilly of O’Reilly Media.
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