Privacy advocate Paul Feldmans resignation Wednesday from his post as co-chairman of a federal HHS healthcare information technology advisory panel raised both cheers and concerns from his peers in the privacy community, and an expression of sadness from HHS.
Feldman, the deputy director of the Health Privacy Project, a Washington-based not-for-profit organization, resigned from the confidentiality, privacy and security work group of the American Health Information Community in a two-page letter to Robert Kolodner, interim director of the Office of the National Coordinator for Healthcare Information Technology at HHS. Copies were sent to HHS Secretary Mike Leavitt and to 12 members of Congress.
According to the letter, the Health Privacy Project was invited by HHS in 2006 to join the AHIC work group. Thus, the letter was signed by both Feldman and Janlori Goldman, director of the Health Privacy Project, although Feldman has attended work group meetings and he is listed as co-chairman on the group official HHS Web site along with Kirk Nahra, a Washington lawyer for hospitals and health plans.
The Feldman/Goldman letter acknowledged that while the work group had made an important recommendation on the narrow issue of identity proofing, it wasnt enough. "We have determined we are unable to continue given that the work group has not made substantial progress toward the development of comprehensive privacy and security policies that must be at the core of a nationwide health information network," they said.
In an e-mail to Feldman and Goldman, Deborah Peel, an Austin, Texas, psychiatrist and the founder of the Patient Privacy Rights Foundation, applauded the move.
"Bravo," Peel wrote. "It clearly is untenable for you to stay if they wont really do privacy. Its a very powerful statement and were grateful you made it."
James Pyles is a Washington attorney who, on behalf of the American Psychoanalytic Association, brought a lawsuit against HHS to the U.S. Supreme Court in an unsuccessful attempt to overturn the 2002 administrative privacy rule revisions to the Health Insurance and Accountability Act. The rule change gave federal authorization to the electronic exchange of patient information without consent for patient care, payment and "other healthcare operations." Under the original rule promulgated in 2000, consent was required for all three activities.
Pyles said in an e-mail: "The Health Privacy Project should be commended for taking this principled and courageous action. The basis for the decision contained in their letter of resignation is essentially the point I made on modernhealthcare.com on Feb. 6 that the confidentiality, privacy and security work group has shown little interest in addressing the patient's right to health information privacy in a comprehensive and timely manner."
The Health Privacy Project appears to now have joined with the GAO, the National Committee on Vital and Health Statistics, Patient Privacy Rights, the American Psychoanalytic Association and a growing number of other organizations in recognizing that recognition and preservation of the patient's right to health information privacy, including an ability to exercise that right, is a prerequisite for successful implementation of a nationwide electronic health information system. The longer HHS delays recognizing the patient's right to privacy and the right of consent for routine disclosures, the longer the benefits of health IT will be delayed."
Pyles references were to a Government Accountability Office report released at a Senate committee hearing Feb. 1 that was critical of the handling by HHS of privacy issues as part of its program to promote healthcare IT usage, and the work of a NCVHS privacy and security panel, which sent six pages of recommendations to HHS Secretary Mike Leavitt in June 2006.
AHIC is a 17-member committee of public sector and private sector members that was first announced by Leavitt in mid-2005 to advise him and the government on healthcare information technology issues. AHIC first met in October 2005 and has since divvied its tasks among work groups, although initially, privacy was not the primary focus of any one of the four original AHIC work groups (chronic care, consumer empowerment, electronic health records and biosurveillance were).
A call to create an AHIC panel to delve into privacy and security didnt occur until May 2006, and it came at the recommendation of members of three of the four original work groups who kept bumping against privacy issues in addressing their primary tasks.
Initially, however, the new panel was to be organized as a subcommittee of the consumer empowerment work group. At first it was called the confidentiality and security group, reflecting an effort to express a semantic difference between privacy and confidentiality. By its first meeting in August 2006, however, the new panel had been elevated to the status of a full AHIC work group with the word privacy added to its title.
In an e-mail response to a request for comment from ONCHIT, HHS spokeswoman Christina Pearson gave the following statement: "Privacy and security are integral components of the national health IT agendacomponents which are being vigorously pursued through a spectrum of initiatives and are laying the foundation for future public and private sector activities. While we are saddened that Mr. Feldman will no longer co-chair the working group, we remain strong in our commitment to developing comprehensive privacy and security policies."
Feldman and Goldman also noted that most of the NCVHS privacy recommendations sent to Leavitt last June have not been addressed by HHS."
Mark Rothstein is a lawyer and the director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine. Rothstein also is chairman of the NCVHS privacy subcommittee whose work largely has been ignored, according to the Feldman/Goldman letter.
Rothstein said Feldman faced a tough choice.
"I think whenever youre serving on any organization that doesn't respond in a way that you think it really has to, you have a dilemma," Rothstein said. "The dilemma is, do you quit and protest and (hope) it will sort of startle them into doing the things you think need to be done, or do you stick it out and help them change course. Its a dilemma many of us have faced over the years."
Whats the right thing to do? According to Rothstein, "It depends on the circumstance. Im not going to say he was right or wrong and Im not going to say any good is going to come out of it."
But there is no doubt in Rothsteins view that HHS should take Feldmans resignation as "a wake-up call ... about the lack of progress and that something needs to be done. Ive said that every way I know how. Maybe the combination of his resignation and the GAO report and the hearings will get that point across."
Pam Dixon, who heads the San Diego-based World Privacy Forum, was dismayed by Feldmans departure.
"Im sorry hes gone," Dixon said. "I thought he was doing a very good job representing privacy, balancing the ins and outs. Im glad he was there. My concern going forward is that he needs to be replaced with someone with similar privacy expertise and similar viewpoints.
"Is HHS doing the best possible job on privacy?" she asked rhetorically. "No, its not. Its lagging behind. That is true.
"This is why the World Privacy Forum doesnt take positions like this. I thought Paul was very brave for trying to take it on and try to make change in a setting where change isnt quick. But I have to respect what he said. There isnt a move (by HHS) toward a comprehensive change toward a privacy program."
Rep. Pete Stark, (D-Calif.), a recipient of a copy of Feldman's resignation letter, said in a written response to a request for comment: "The only way health information technology will take off is if people have confidence that their sensitive medical information will be protected. Without this assurance, we will never be able to realize the benefits that electronic systems offer. Democrats pushed for privacy protections during last year's debate, but our pleas fell on deaf ears. I hope that the GAO report and Mr. Feldman's resignation will finally be the wake-up call this administration needs to begin taking this issue seriously."What do you think? Write us with your comments at [email protected]. Please include your name, title and hometown.