The Health Information Technology Policy Committee heard testimony on data protections from a range of professionals advocating for more clarification of privacy and security issues.
There are different expectations about access to information, said Susannah Fox, associate director of the Pew Internet & American Life Project. A survey conducted by the project showed people are not waiting for new privacy regulations under the Health Insurance Portability and Accountability Act of 1996 to access information. But while more people are turning to the Internet for medical advice, that path has not replaced the traditional desire for a relationship between doctor and patient, she said. Privacy and security are not the end goal for patients: “Health is the end goal,” she said.
Deborah Peel, a physician who is founder and chairwoman of Patient Privacy Rights, continued her efforts to ensure information privacy is the cornerstone of any reform. “Privacy issues are foundational and really belong at the beginning,” she said, adding that plans that have been put in place for years do not include privacy in the infrastructure.
The policy committee was established this year under the American Recovery and Reinvestment Act of 2009 to make recommendations to HHS' national coordinator for health IT on how to frame a national health information network.