"The health care and health data mining industries will not willingly build and use privacy-enhancing electronic health records and systems unless you act to set a high bar," Deborah Peel, M.D., founder of the coalition, testified on Sept. 18 before the policy committee. "Congress set a high bar in the ARRA. Congress recognized that the status quo for privacy will not ensure trust and required HIT systems to add new privacy rights very quickly."
Peel recommended the committee adopt the following broad policies to ensure consumer engagement, choice and trust:
* No protected health information should be "exchanged" without the informed consent of the patient.
* Patients have a right to designate a place where providers must send a copy of their electronic medical information shortly after each encounter at no charge.
* All access to patient records via health information exchanges must be with the explicit permission of the patient. Access rules must authorize patients to selectively prevent the release of specific information to specific providers at specific times.
Peel's full testimony, and testimony on privacy issues from other individuals and organizations, is available at http://healthit.hhs.gov/portal/server.pt. Click on Federal Advisory Committees, then Health IT Policy Committee, then scroll down to the Sept. 18 meeting materials.
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