Code of ethics drafted for Web health care info

Final version of code is expected in May

Organizations that share health care information on or over the Web are feeling the pressure to step up their privacy efforts. Now an Internet health constituency has created a code of ethics that it hopes many of such organizations will adopt as a standard.

Much of the spotlight on the organizations stems from a negative report on health-site privacy concerns issued in early February by the California HealthCare Foundation in Oakland. According to the report, many health sites that have official privacy policies don’t adhere to them. (For more information about the report, see Hospital Payment & Information Manage-ment, April 2000, p. 52, or read about it at the Web site http://ehealth.chcf.org.)

Since publication of the report, the Federal Trade Commission has announced it is investigating the privacy practices of health Web site owners as part of its overall Internet privacy review.

The Internet Healthcare Coalition in Washing-ton, DC, is hoping to allay consumer fears about the privacy of health information on the Internet by calling on industry representatives to create the code of ethics.

The coalition used its e-Health Ethics Summit in January to produce the first draft of this "Inter-national e-Health Code of Ethics." The draft code was created with the input from key Internet health participants including consumers and patients, health care professionals, ethicists, dot-com entities, academicians, special-interest societies, manufacturers of regulated drugs and medical devices, governmental agencies, and international representatives. (See draft of the code, above.)

The Hastings Center, an independent, nonprofit research institute in Garrison, NY, that addresses ethical issues in medicine and the life sciences, reviewed, organized, and edited the minutes of the working summit to develop the current draft code. While developing the draft, both the summit steering group and The Hastings Center preserved the original language of the working summit.

After an eight-week period of public comment and consultation, the draft is scheduled to be revised for final publication about the middle of May.

Now that the code has been drafted, the coalition is working on methods by which the code can be implemented and promoted, says John Mack, coalition president. The coalition’s e-health ethics steering committee has been using a schedule of speaking engagements to tell people about its initiative.

The initial reaction to the draft code has been positive, Mack says. "We have been very gratified by the response we have received from many Internet companies."

The coalition also is considering calling upon a broad range of organizations to endorse and promote the code and work with accrediting organizations to develop measurable, universal standards based upon the code.

Standards organization will audit

Once standards are established, a standards organization can audit and accredit sites and educate employees, Mack explains. "Our process of [building] consensus among a broad base of stakeholders [not just for-profit dot-coms] and open, public debate and commentary already goes a long way to establishing standards that will be meaningful."

Although the coalition is working with other organizations to establish standards, it is not a standards’ enforcement body, Mack emphasizes.

"Our mission is primarily educational, and we will focus on educational activities in support of the code and standards that may derive from the code," he says.

Planned educational activities include publication of a book on e-health ethics, privacy, and fraud that includes contributions from notable authors; ethics workshops to educate employees of Web sites about good ethical practices; and the coalition’s annual meeting in October: "Quality Healthcare Information on the Net 2000: Establishing Trust, Ensuring Privacy, Enabling E-Commerce."