On Privacy and PHRs

Posted by Lygeia Ricciardi on December 19, 2007

Many of the posts on this blog directly or indirectly address the topic of privacy, which is of course a core issue concerning PHRs specifically and the electronic exchange of health information generally.

If you haven’t already seen it, take a look at the Project HealthDesign E-primer, The Need to Know: Addressing Concerns about Privacy and Personal Health Records. It gives a good overview of the privacy landscape in this context, touching on topics including pending legislation and ethical issues.

Regarding ethics, Ken Goodman explores the implications of defining privacy as a “human right”—if our society does so, we free ourselves from a great deal of debate about protecting it. But where would the boundaries of such a right lie? The E-primer poses some difficult policy questions, such as whether health information collected by a patient in a PHR should be treated differently from medical record information under current regulations.

A couple of privacy-related questions that the E-primer brought to my mind are the extent to which “deidentified” data are really deidentified, and the immense challenge of consumer engagement and education about health information exchange. Many of us want consumers to have a greater degree of control over their own health data, but how do we accurately convey everything consumers need to know to make well-informed choices? How can we realistically involve consumers not merely as recipients of electronic health information and the policies that govern it, but as active participants in shaping the policies and tools that apply to them? More on these and other privacy-related topics soon...