Privacy Leader Takes Issue with ‘Myths’ about Big Data

Responding to a recently published story in Health Data Management, The Biggest Big Data Myths of 2013, as well as the news that drug database vendor IMS Health Holdings will go public, Deborah Peel, M.D., leader of the Patient Privacy Rights advocacy group, offers a different view of Big Data:

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Comments (1)
Dr Peel,

I believe the correct answer is consumer control of "their" health information.

In your rhetorical question:

"just ask anyone you know if they ever agreed to the hidden use and sale of sensitive personal information about their minds and bodies by corporations or 'research' businesses for analytics, sales, research or any other use. The answer is 'no.'"

you assume that the unilateral response of 310+ million people is an automatic "no".
I would respectfully suggest that if you rephrased the question, the answer may change:

- If, your personal health information and that of your family's, could be analyzed to provide an earlier indication of health issues, changes/trends in health status, or identify courses of treatment that are more likely to benefit you and add years to your life, or quality to those years, would you share your health information?

- If your personal health information could be aggregated with others and the collective results be used to identify new treatments, more effective treatments for some of the most serious medical conditions - conditions that you may experience at some point in your life and as a result of this research improve the treatment and outcome of those conditions - would you share your health information?

- If you personally purchased a health monitoring device - perhaps an activity monitor, and it was possible to have your health data automatically integrated with that device so that you could see in near real time that your increase in activity was improving your blood pressure, cholesterol values, blood sugar levels - would you authorize the release of your personal health data to the provider of the device/application?

Are there risks in sharing personal health information, obviously - yes. However, that should not mean that we unilaterally limit the incredible potential to link personal health information to the management and monitoring of personal health, or the aggregation of personal health information to advance to practice of medicine.

So, I believe the correct answer is - consumer choice/consumer control over their health information. What we in the industry must do, is to provide an environment where individual consumers have control over their health information and can easily indicate where/when/how they approve of the sharing of their personal health information.

Fortunately for the health industry, these challenges have already been addressed and resolved in many other industries. The future of healthcare is bright and the future is "data-based".

Brian Baum
Founder/CEO vitaTrackr, Inc.

Posted by Brian B | Monday, January 27 2014 at 10:35AM ET
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