May 21, 2010

A New Conversation About Health Privacy

Facebook has sparked a new debate about privacy and I think it’s time to bring it to health care.

What does it mean when millions of people flock to share/overshare information, even as Facebook’s default privacy settings have slowly become openness settings (but the company maintains radio silence)? Pew Internet research shows that a sizeable portion of the population (young people, in particular) carefully manage their online reputations, but where does that leave the rest? Consumer groups in the U.S. have requested an investigation and the Canadian and German governments are sharpening their knives, too.

Now, to add the health angle, PatientsLikeMe’s Ben Heywood posted yesterday about transparency, openness, and privacy:

We do not want anyone to be surprised by the impact of sharing data on PatientsLikeMe.  We believe in openness, but we also want people to knowingly make the choice to be open with their health information.

…Recently, we suspended a user who registered as a patient in the Mood community.  This user was not a patient, but rather a computer program that scrapes (i.e. reads and stores) forum information.  Our system, which alerts us when an account has looked at too many posts or too many patient profiles within a specified time interval, detected the user.  We have verified the account was linked to a major media monitoring company, and we have since sent a cease and desist letter to its executives.

I love that word knowingly. Are consumers competent to make the decision to openly share their observations of daily living? Is it OK that a private company can leverage that data for profit (as long as they’re open about it)? What would be different about the Facebook controversy if Mark Zuckerberg had come out with a statement like that when the first stories broke?

I’m reminded of what Paul Ohm wrote about the broken promise of HIPAA:

[I]t is hard to imagine another privacy problem with such starkly presented benefits and costs. On the one hand, when medical researchers can freely trade information, they can develop treatments to ease human suffering and save lives. On the other hand, our medical secrets are among the most sensitive we hold.

I’m also reminded of my own research finding that people living with chronic disease have a secret weapon: Each other. Mobile, social technologies are tapping in to a human need to connect with each other, to share, to lend a helping hand, and to laugh.

I’d like to start a conversation about health privacy that includes an open dialogue about the risks and benefits of sharing. Who’s in?

Join the discussion on e-patients.net.