ACLU, others criticize health agency’s handling of citizen comments

Thursday, February 17, 2000

Several civil liberties groups, led by the American Civil Liberties Union, contend that the Department of Health and Human Services has stifled comment on recently proposed federal health-privacy regulations, thus infringing upon the public’s petition rights.

Despite the agency’s three-month effort to gather public input about the proposals, the ACLU says federal officials dismissed several thousand faxed comments. Some call the agency’s effort to gather comments “burdensome” and “non-user-friendly.”

The comment period for the rules, which would forbid the release of most hospital and health-related records without the express consent of the patient, ends today.

“This is a classic example of David versus Goliath,” said Laura Murphy, director of the ACLU’s Washington, D.C., office. “The HHS system is set up so that it is far easier for special-interest groups like the insurance industry to weigh in than it is for the average person to make their views known.”

Last October, the Health Department unveiled sweeping new rules designed to protect the privacy of patients’ medical records. Such rules, if approved, would improve patients’ access to their records; streamline records release to physicians, health-care providers and researchers; and require written authorization for use and disclosure of health information for any other purpose.

Press advocates worry that the proposed rules could create problems for news organizations trying to obtain even the most basic information about hospital patients.

Privacy advocates, on the other hand, argue that the proposed rules were not tough enough and would bolster the release of private information, particularly to publicly funded researchers.

Soon after the announcement about the proposed rules, the ACLU created a page on its Web site to enable visitors to send personalized faxes to the HHS. But after more than 2,400 faxes, the agency stopped accepting the faxes and asked that no more be sent.

HHS spokeswoman Lorrie McHugh didn’t return calls for comment. In published reports, McHugh has said that the agency doesn’t accept faxed comments but said the public could make comments by visiting the agency’s Web site or by sending input through the mail.

But Kent Snyder, executive director of the Liberty Study Committee, noted that the e-mail option required users to register at the HHS Web site and answer and a series of personal questions. The site then assigned users an identification code and password to allow them to send their comments.

Snyder said the mailing option was even more burdensome because it required the public to send four copies of their comments and a floppy disk if possible.

In response, Snyder’s group last week launched to enable visitors to send their comments to the agency. Snyder said he personally would deliver the comments to the agency. In a week’s time, about 9,300 people had posted comments.

But Murphy said that while many people managed to get their comments to the agency, efforts to gather citizen input must change.

“Where is the opportunity for the American public to tell Secretary [Donna] Shalala, ‘I am concerned,’ without having to submit their comments in quadruplicate or spend hours combing the agency’s Web site,” she said. “It is time for the reality of how HHS operates to match the president’s promise of public participation.”