The President’s Council of Advisors on Science and Technology (PCAST) weighed in on the key problems with how the Administration is building health IT systems and data exchanges. They recommend that patients be able to meta-tag data to protect privacy, that interoperability requires adoption of a common “language”, and that the goal should be a “data-centric” system for research on all health records without consent. The report recommends that HHS and CMS decide when patient data can be used for “secondary” purposes without consent.
See the full PCAST report: http://www.whitehouse.gov/blog/2010/12/08/pcast-releases-health-it-report
Patient Privacy Rights letter of comments to HHS emphasized:
- Privacy is essential to build in up front.
- We should not rush to deploy systems and spend billions on electronic systems and data exchanges until we know the privacy technologies PCAST recommends are adequate.
- The recommendations for de-identifying health data were insufficient. Extensive work needs to be done to ensure that standards for de-identification actually work.
See PPR’s full comments here: http://patientprivacyrights.org/wp-content/uploads/2011/01/PCAST-comments-PPR-Final.pdf
See PPR’s written testimony here: http://patientprivacyrights.org/wp-content/uploads/2011/05/Patient-Privacy-Rights-Testimony-PCAST-WG-Feb-15-2011.pdf