2013 Health Privacy Summit

3rd International Summit on the Future of Health Privacy

The Value of Data vs. Health Privacy: How Can the Conflict Be Resolved?


News from the Summit

One of the Summit’s most notable presentations came from Harvard Professor Latanya Sweeney and Bloomberg News’ Jordan Robertson, who presented their findings that anyone can re-identify patients using publicly available information. By purchasing state health data sets for $50 and matching the data with newspaper articles, they were able to identify who had been hospitalized for what specific conditions. This means that anybody—a financial institution, an employer, an insurance company, a person snooping on friends and family—can see your private health information by piecing together different bits of information about you that is easily available to the public.

The development of these State Health Information Exchanges, which allow your health data to be transferred to other doctors, insurers, researchers, commercial users, and many others, will make it even easier to carry out the type of re-identification Sweeney and Robertson describe. It’s time to put you back in control of your own personal health information. Sign the petition asking Congress to protect your privacy and put you in control of your health data.

Read Robertson’s article about their investigation here: States’ Hospital Data for Sale Puts Privacy in Jeopardy


Louis D. Brandeis Privacy Awards

During the Summit’s Celebration of Privacy, Patient Privacy Rights recognized two outstanding individuals for their contributions to the field of consumer data privacy and security. The first award was presented to European Data Protection Supervisor, Peter J. Hustinx, for his remarkable work monitoring and regulating the processing of personal data carried out by EU institutions and bodies. The second award went to Mark Rothstein, the Herbert F. Boehl Chair of Law and Medicine and the Founding Director at the Institute for Bioethics, Health Policy & Law at the University of Louisville School of Medicine, for his many years of exceptional research and publications relating to bioethics, genetics, health privacy, and public health.


 Summit Materials

2013 Health Privacy Summit Agenda (pdf)

2013 Health Privacy Summit Speakers (pdf)

2013 Health Privacy Summit – Full Program (pdf)

2013 Celebration of Privacy Program (pdf)

Videos (Links to PPR’s YouTube page)

Sponsors & Partners (pdf)