The American Health Information Community Consumer Empowerment Workgroup on Wednesday said they would continue to study the policy issues related to secondary use of health care information, Healthcare IT News reports.
Karen Bell, director of HHS' Office of IT Adoption, said now is the time to tackle the issue because electronic health record adoption still is low and personal health records do not yet contain much clinical information. "I think we are recognizing that we're not even close to finding all the answers on this," Bell said.
Charles Safran of Harvard Medical School testified before the work group on secondary uses of health data. "We believe there is tremendous value in secondary use of health information," he said, adding, "It's so important to national health, but we need to have better guidelines on how this information should flow."
Guaranteeing the privacy of health data is key to winning public trust, and the technology has outpaced policies and procedures so far, Safran said. He added, "The public is woefully unaware to what is happening to their data."
Nancy Davenport-Ennis, co-chair of the work group and executive director of the National Patient Advocate Foundation, said the group initially will focus on determining who owns the data. She added that the group should look into how to regulate a violation of stewardship over the data, how to protect consumers and how to provide incentives to consumers who make lifestyle chances based on the data collected.
In addition, the Agency for Healthcare Research and Quality recently requested information on the idea of national stewardship over the secondary use of data (Manos, Healthcare IT News, 7/12).