Health Web sites develop privacy principles
Some health-related Web sites that were criticized for their privacy policies have joined with other health sites and content providers to help consumers find reliable health information and services on-line.
The sites were criticized in a report issued in February by the California HealthCare Foundation in Oakland. The report found that some health sites that have official privacy policies don’t adhere to them, and visitors to those sites may find their personal information at risk of disclosure to third parties. (For information on how to get a copy of the report, see editor’s note at the end of this article.)
The collaboration between the sites, Health Internet Ethics (Hi-Ethics), was formed in November to address privacy, advertising, and content quality issues for Internet health consumers. Hi-Ethics is comprised of 20 Internet health sites and content providers:
• adam.com;
• allHealth.com/iVillage;
• America Online;
• AmericasDoctor;
• CareInsite;
• Discoveryhealth.com;
• drkoop.com;
• HealthCentral.com;
• Healtheon/WebMD;
• HealthGate;
• HEALTHvision;
• Healthwise;
• InteliHealth;
• LaurusHealth.com;
• Mediconsult/Physicians’Online;
• Medscape;
• OnHealth;
• PersonalMD;
• PlanetRX;
• WellMed.
The companies involved have shown a cooperative spirit, says Donald W. Kemper, chairman of Hi-Ethics and CEO of Healthwise in Boise, ID. "Many companies set aside competitive pressures and business opportunities in order to meet our goal."
Hi-Ethics’ goals include:
• providing health information that is trustworthy and up-to-date;
• clearly identifying on-line advertising and disclosing sponsorships or other financial relationships that significantly affect their content or services;
• keeping personal information private and secure, and employing special precautions for any personal health information;
• empowering consumers to distinguish on-line health services that follow the principles from those who do not.
Hi-Ethics member companies say they intend to be fully compliant with the principles by Nov. 1, 2000.
Broad-based support
Another group, however, contends that its Internet ethics code will better protect consumers who use the Internet for health-related purposes. The Internet Healthcare Coalition in Washington, DC, says that four features distinguish its eHealth Code of Ethics from other efforts to improve eHealth information and services:
1. Its principles were developed by a broad, international coalition of stakeholders (users and providers) in eHealth information and services, rather than a single type of industry or organization.
2. The process was open to the public; the draft code was published for public comment on the Internet and comments were incorporated into the final version.
3. Its principles are based strictly on ethical considerations — not legal considerations.
4. Its principles are deliberately designed to lend themselves to specification and interpretation to satisfy the individual practical needs of different kinds of stakeholders. For example, issues faced by dot-com companies differ from those of health insurers, academic institutions, or consumers, so each group of stakeholders needs to elaborate on — or specify and interpret — each principle to meet its specific requirements.
The coalition released its final code of ethics for health care sites and services on the Internet in May. The code is the product of the eHealth Ethics Initiative, an ongoing international agenda organized by the coalition. The principles of the code reflect "broad-based participation by leaders in industry, academe, government, patient and consumer advocates, and comments on the initial draft submitted for public review in February," the coalition says.
In developing the code, a steering group was elected by participants in the eHealth Ethics Initiative’s "Summit," which met in January 2000. The steering group has been assisted by staff and fellows of The Hastings Center, an independent, nonprofit research institute in Garrison, NY, and by the staff of Training Resources Group, an Alexandria, VA, firm specializing in facilitating consensus-building and decision-making processes. The steering group is co-chaired by Helga Rippen, chair of the Internet Healthcare Coalition, and Ahmad Risk, chair of the British Healthcare Internet Association. (For more information about the draft code, see Hospital Payment & Information Management, May 2000, p. 68.)
There were two major sources of input guiding revisions to the draft eHealth code, says Bette Crigger, editor of the Hastings Center Report. Those sources were the public feedback on the draft and Crigger’s professional judgment as a linguist and an editor with more than 10 years experience in bioethics.
Changes were primarily made to add further detail and clarity to the explanatory material accompanying each statement of guiding principle — not to the content of the code, she says. "The most significant revision was to restructure the code as a set of eight guiding principles [as opposed to the original five]." The steering group had asked that the code be clear and simple in its expression.
Here are the code’s new eight guiding principles, which the coalition says will provide a broad ethical framework for all stakeholders:
• candor;
• honesty;
• quality;
• informed consent;
• privacy;
• professionalism in on-line health care;
• responsible partnering;
• accountability.
The complete, final code is available at the Internet Healthcare Coalition’s Web site. The coalition is developing plans for implementing and managing compliance with the code. It says that such plans will evolve over time as the health-related uses of the Internet continue to change.
Proposed compliance steps include:
• implementation of a supervised mechanism for identification of compliant sites and services;
• development of systems for monitoring and oversight of compliance (including random inspection/review);
• establishment of a series of systems for reporting and review of potentially or actually delinquent sites/services;
• identification of actions to be taken against noncompliant sites/services.
(To access the report by the California HealthCare Foundation, visit the foundation’s Web site at http://ehealth.chcf.org.
The coalition received more than 50 comments about the initial draft policy. These comments are posted on the coalition’s Web site at http://www. ihealthcoalition.com.)
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