Thursday, March 07, 2013

Transparency: The Best Privacy Policy



I’ve long been an advocate of an approach to managing online privacy that relies on disclosure and awareness. Privacy, after all, is a highly personal thing and each of us defines privacy in a highly fluid context. I may be very protective of the financial details of my life, but willing to freely share medical information. Others, however, may be comfortable sharing more about their lives and decisions.

Social media platforms like Facebook, Foursquare, LinkedIn and a host of niche players rely on the public’s willingness to share, and every platform grapples with the challenges of privacy management. Despite the inevitable complaints, the public participates because the benefits outweigh the risks. Reconnecting with family and friends; making and maintaining business contacts; telling friends – and the world – where we are and where we plan to be.

The transparency approach is one being employed by a social network called PatientsLikeMe, and given the site’s purpose, it’s a site that bears watching.

According to this article on HealthLine.com, PatientsLikeMe is “an online community founded in 2004, which allows patients to manage their conditions and connect with others who share similar experiences.” As the article notes, PatientsLikeMe has been give a grant from the Robert Woods Johnson Foundation to conduct research that is predicated on its members openly sharing sensitive medical information about their lives.

The risk/reward proposition proffered by PatientsLikeMe is one of selflessness with a goal of providing information that researchers believe will help them reach faster, better conclusions about treatment outcomes for specific diseases and medical conditions.

Some so-called consumer advocates would argue that the level of sharing required for this project to be successful should be regulated into oblivion. I argue that the people in the best position to make that decision are the individuals making those decisions for themselves – as long as PatientsLikeMe, and every other social platform out there, makes it clear how the users’ personal information is used and provides both the knowledge and tools necessary to make an informed decision.

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