April 27, 2015

To Share or Not to Share

That is the Question

Experience should teach us to be most on our guard to protect liberty when the government’s purposes are beneficent. Men born to freedom are naturally alert to repel invasion of their liberty by evil-minded rulers. The greatest dangers to liberty lurk in insidious encroachment by men of zeal, well-meaning but without understanding.

[Olmstead v. U.S., 277 U.S. 438 (1928) (dissenting)]
~ Louis D. Brandeis

Last year I purchased a Fitbit as a convenient way to help track my walking habits. What I purchased and began to wear, I quickly learned, is capable of monitoring and reporting much more than my daily steps. This little device, can monitor and report my pulse, sleep patterns, calories burned and more. It provides dashboard type progress reports on my smart phone, tablet and laptop. And, oh, it can also track my location at any given moment!

As someone who values personal privacy, I questioned whether I wanted my sleep patterns stored, sorted, parsed, and analyzed by some machine operating in the ubiquitous cloud. My internal interrogatory continued. Where does all this data go? Who gets to see it? How is it used? How does it help me? And how might this hurt me? My internal dialog turned to what I believe is the obvious question: why are so many people willing to share so much personal information?

Share or not...

I suspect many people utterly fail to consider or realize just how much information they are sharing and with whom. And some, like me, weigh the value they will receive against the risk of providing such information. Not surprisingly, for those folks that run such considerations through their internal return on investment filter the definition of value varies greatly from person to person. Some people are willing to share demographic information simply to stay current on the latest social media topics, while others might refuse any type of service that demands even their email address. For some, the convenience of a search engine’s personalized suggestions outweighs the concern about either voluntarily or involuntarily (e.g., pages viewed, pages skipped, time on a page, links clicked and pages skipped, etc…) surrendering personal information being gathered, used, and sold by the search provider. For others, the eerily accurate, personalized suggestions are perceived as intrusions into their privacy.

The broader implications of sharing personal information in the ever-growing digital ecosystem are often not in the forefront of our thoughts until our own data is compromised or used unethically. Most Americans expect and believe that access and use of personal data is protected by both the entity collecting the information and by government compliance regulations. The Terms of Use and Notice of Privacy of the entity receiving your data can offer a gauge on how your information will be used and are important to read before sharing personal data. Despite the intentions of that entity, however, attacks by hackers into private and public data present a constant threat, and the expectation that our personal data is protected might not be realistic. The question arises whether people view the known risk of a breach of information similarly to other everyday risks such as using a credit card or getting on an airplane, or if it is perceived as a different type of risk altogether.

Personally, I’ve decided that I value the ability to monitor my activities, so I continue to use some, but not all of my FitBit’s features. My decision about which features to use is strictly based on my own value judgements. On the other hand, I actively participate in the healthcare patient portals available to me, since I am comfortable that the value outweighs the risk since I know the data is rigorously and actively protected.

When individuals share private information, they make value judgements on the worth of their privacy, whether or not they realize it. As the recipients and aspiring stewards of data, companies collecting and storing information have a responsibility to use the private information they collect and store in accordance with applicable laws, requirements, and best practices. Each individual is responsible for being an informed and vigilant consumer, securing his or her personal information as best he or she can, and, at the minimum, understanding how the information they share is used and/or protected.

Coming Soon: Healthcare and the Privacy Paradox

Digital Health is defined in many ways and affects many people—from payer to provider to patient, from researcher to manufacturer to consumer—all of whom will have different perspectives on the question at hand: Where do we draw the line between personal privacy and third-party use of health data? Each perspective is valuable, and every opinion is valid.

What do you think?

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