A privacy group reacts to the new code of ethics

An organization that fights for patients’ rights to privacy would like to see a code of ethics for the transmission of health care information go even further. The National Coalition for Patient Rights in Andover, MA, recently consulted with Internet experts to make an initial review of the "International e-Health Code of Ethics," published by the Internet Healthcare Coalition in Washington, DC. Here are the organization’s comments. (See the code of ethics draft, p. 69.)

The initial log-in to a health care Web site should be anonymous.

"You should be warned before data collection begins," says Peter Kane, MSW, LCSW, BCD, executive director of the National Coalition for Patient Rights. Sites usually can identify visitors through their Individual Service Provider (ISP) number. "The site should destroy your ISP if you just log on and off."

Consumers should be able to read and electronically sign a release of information waiver form or informed consent.

"It should raise the issues talked about in the policy," Kane says.

Business partners should be held to the same level of privacy as the initial heath care Web site, particularly in terms of information re-disclosure.

"Once the information starts to go downstream, no one has any control over it anymore," he says.

Sites should only ask visitors for minimal information.

"A site should only be asking for the information that it needs to perform its service," he says. "It shouldn’t be asking for [purposes of] prospective data collection."

A data security standard should be set.

"It’s not clear [in the code] that there is a high standard for data security — just that there is security," Kane says.

Consumers should be informed about the policy regarding information storage.

The code asks for an audit trail on the use of information. Instead, health care Web sites should have an audit trail for any access of information, Kane says. Also, will the site ever destroy the information, and if so, how? "Is there an expiration date on the information? What happens if the site goes out of business?"

(The draft code of ethics can be fully accessed with additional notes and definitions via the coalition’s Web site: www.ihealthcoalition.org/community/ethics. html.)