Next-generation PHRs surface new questions on privacy and ethics
Thanks to Lygeia Ricciardi for the following...
"Many of the posts on the Project HealthDesign 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 (who heads up Project HealthDesign's efforts to better understand the ethical, legal and social implications of future PHR directions) 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."
This E-primer asks how consumers may regard issues of privacy, security and control of their health data in an age of smarter PHR systems, and how policies and norms may shift as a result. Will people be willing to share personal health information in order to gain greater efficiencies in their everyday lives? We do it all the time now with personal banking and finance info. Another question - how will the Myspace and Facebook generation treat the disclosure of personal health specifics in this era of all-about-me online identity?