Members of the Privacy Coalition represent a wide swath of the American political and social spectrum, ranging from the liberal American Civil Liberties Union to the conservative Free Congress Foundation. The Patient Privacy Rights Foundation and the World Privacy Forum, familiar participants in healthcare information technology privacy debates, are members of the coalition, as are such diverse groups as the American Library Association, Consumers Union, Eagle Forum, National Rifle Association, United Auto Workers union and the U.S. Public Interest Research Group. EPIC, a coalition member and medical privacy advocate, in 2007 filed a “friend of the court” brief supporting a New Hampshire state law banning the sale of prescriber-identified prescription drug information for data-mining and the marketing of prescription drugs to physicians. The federal courts upheld the ban.
EPIC was more enamored of Obama's medical privacy protection efforts than some other organizations represented at the news conference, and far more so than participants in an open, Web-based poll. For its medical privacy efforts so far, the administration earned an A- from EPIC.
That relatively high mark came largely because the Obama administration has appointed medical-privacy advocates to government committees, while under the Bush administration they were “completely frozen out,” and because the American Recovery and Reinvestment Act of 2009, which Obama signed into law in February, contains some significant new privacy protections, according to EPIC Associate Director Lillie Coney.
“The reason why we've released the report card today is because of the legacy of the Bush administration,” Coney said during a telephone news briefing. “The nation expressed a need for a change in the election.”
Coney said EPIC chose to give the Obama administration “full credit” for the privacy measures in the stimulus law, which include a ban on the sale of healthcare information, a federal breach-notification requirement, more elaborate privacy audit report requirements, the closure of the Bradbury loophole for the criminal prosecution of violators under the Health Insurance Portability and Accountability Act and stiffer penalties for HIPAA violators.
Prior to privacy amendments in the stimulus act, “The HIPAA rule that was in place for several years did not establish as strong of (a) privacy protection as should have been in place,” Coney said.
Despite the high mark, EPIC left some room for the Obama administration to improve its grade by fully implementing the stimulus law's protections. “It is yet to be seen how those safeguards will be implemented,” she said.
Others in the coalition were less generous in grading Obama's privacy performance.
One of them was Michael Ostrolenk, the national director and co-founder of the Liberty Coalition, a Washington-based organization devoted to “preserving the Bill of Rights, personal autonomy and individual privacy,” according to a mission statement on its Web site. Ostrolenk also serves as an advisor to the Association of American Physicians and Surgeons.
Ostrolenk said he gave the administration a D+ for medical privacy, affording it only partial credit for the stimulus law provisions prohibiting the sale of medical data and a requirement for breach notification he said was of “limited” use. Part of the problem, Ostrolenk said, is HIPAA, the key federal health information privacy law, also affords only limited privacy protections.
“HIPAA is really a disclosure rule,” Ostrolenk said. If the Obama administration were serious about privacy it would support H.R. 2630, legislation introduced earlier this year by Rep. Ron Paul (R-Texas), which would allow individuals to opt out of any federally mandated, created or funded electronic health-record system, and require a record-keeper to obtain the informed consent of a patient before his or her electronic medical records could be shared.
Visitors to the Privacy Coalition and EPIC Web sites, however, were even tougher on the president than Ostrolenk.
A majority of respondents to a poll on both sites handed Obama failing grades across the board on medical privacy, consumer privacy, civil liberties and cyber-security.
For medical privacy, 61% of poll respondents gave the administration an “F”.
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