Report Recommends Patient Privacy Safeguards

A panel of "health experts" yesterday recommended that organizations that share patient-identifiable health information protect confidentiality by establishing voluntary "oversight boards" similar to researchers' institutional review boards, Newsday reports. Under the recommendations, any proposed release of "identifiable health information" without a patient's formal consent would require the approval of these "data disclosure boards" (Lane, Newsday, 1/31). The group -- called the Ethical Force Program -- also identified two other "primary" goals for preserving medical privacy: confirming that organizational policies are clearly understood and ensuring that local review boards monitor occurrences when patient consent is not obtained. According to Matthew Wynia, the panel's executive director and AMA's assistant vice president for ethics, the guidelines seek to "fill in" areas where new HHS privacy regulations legalize activity that is "may be legal but not ethical". Other panel recommendations for protecting patient privacy include making privacy policies "transparent," limiting data collection to specific purposes, holding health information "trustees" responsible for handling information "appropriate[ly]" and giving individuals the option of "amending" their records.

Panel chair Myrl Weinberg, who also heads the National Health Council, said the guidelines are "complementary" to the HHS regulations (Fulton, CongressDaily, 1/30). However, Janlori Goldman, head of Georgetown University's Health Privacy Project, questioned how "voluntary efforts" to protect patient privacy will "blend" with federal rules. "We are going to have regulations in this area," she said, adding, "It would make sense to bring the self-regulatory efforts in line with what essentially will be new law" (Lane, Newsday, 1/30). The report can be accessed online at http://www.ama-assn.org/ama/pub/category/3653.html. Note: you must have Adobe Acrobat to download the file.