Internet groups rally to protect user privacy
Internet groups rally to protect user privacy
Health care code of ethics set
Organizations that share health care information on the Web are feeling the pressure to step up their privacy efforts. As hospitals and health systems move toward Internet solutions for registration and other activities, access managers may find themselves in the middle of such discussions.
An Internet health constituency, the Internet Healthcare Coalition in Washington, DC, has created a code of ethics it hopes many of those organizations will adopt as a standard. Meanwhile, 20 of the health sites and content providers themselves have formed Hi-Ethics (Health Internet Ethics), a collaboration to address privacy, advertising, and content quality issues for Internet health consumers.
Much of the spotlight on the organizations stems from a negative health site privacy report 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. (To access the report about the sites, visit the foundation’s Web site at http://ehealth.chcf.org.)
Since the publication of the report, the Fed-eral Trade Commission in Washington, DC, 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 used its e-Health Ethics Summit in January to produce the first draft of the International e-Health Code of Ethics and released the final code on the Internet in May.
Here are the code’s 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 coalition says that four features distinguish its code 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 ones.
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 final code is available at the Internet Healthcare Coalition’s Web site (www.ihc.net). 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.
The other initiative, Hi-Ethics, is made up of these sites and 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, and WellMed.
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 consumers’ principles from those that do not.
Hi-Ethics member companies say they intend to be fully compliant with the principles by Nov. 1, 2000.
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