Health Information Exchanges and Privacy

What if everyone opts out? America has a love hate relationship with the Internet. On the one hand we love getting our information right now, on the other we can’t stand the invasion of privacy that comes with it.

If you are paying attention to more than Google’s doodles these days you are aware of major changes to their privacy policy. Beginning in March, they are consolidating the policies across services which means Google will use data across these services. Of course this has to do with advertising and more money. If I sell boutique maternity clothes, getting in front of women of a particular age group or better yet “expecting a child”, will in theory yield better returns on my advertising dollars. And I will pay more for this advertising. Google has confirmed that you can still opt out of the monitoring of user habits and continue to set your preferences.

Health Information Exchanges are experiencing the same love hate relationships with patients. As the exchanges are being formed the patient privacy issues and policy making on opting in or opting out are front and center. Besides consolidating patient records for accessibility, exchanges have the potential to improve the public health and public health activities. The sheer volume of exchange data could be used in physician base diagnoses, diseased-based non-reportable laboratory data, public health surveillances, and population-level quality monitoring.

But what if everyone opts out? We all want the benefits that come from monitoring user habits on Google. We all need the potential benefits that come from the collection of populations of clinical data. When people choose to opt out are they really looking at the bigger picture?