A privacy group reacts to the code
A privacy group reacts to the code
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 Lexington, MA, recently consulted with Internet experts to make an initial review of the International e-Health Code of Ethics. Here are the organization’s comments:
• 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 can usually identify visitors through their Internet Service Providers (ISPs). "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 form. "It should raise the issues talked about in the policy," Kane says.
• Business partners should be held to same level of privacy as the initial heath care Web site, particularly in terms of information redisclosure. "Once the information starts to go downstream, no one has any control over it anymore," Kane says.
• Sites should only ask 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 of the policy on 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 site goes out of business?"
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