More than 70 million people surfed the Internet this year looking for healthcare information, according to a Harris Poll, and more than 20,000 healthcare sites now compete for the attention--and dollars--of these "cyberchondriacs."
While patients are unearthing information about specific drugs and experimental treatments, physicians and consumer watchdogs are concerned that many Internet sites are of dubious quality.
Meanwhile, ethical concerns are growing about the blurred line between content and advertising. Recent missteps by some of the Web's most popular sites, including the popular drkoop.com, have turned the spotlight on the ethics of e-healthcare sites.
Last month, a coalition representing 16 of the largest, most popular healthcare Web sites responded to these concerns and announced that they are working together to develop a set of ethical standards for health information sites. The alliance, known as Health Internet Ethics, or Hi-Ethics, will focus on site content, advertising and privacy issues.
The group hopes to have a set of voluntary ethical standards ready by March, says acting Chairman Donald Kemper, president and CEO of Boise, Idaho-based Healthwise, a not-for-profit consumer health information organization.
Representatives from other sites, including the AMA's new consumer Web site Medem, are expected to join the alliance in coming months.
"As industry leaders, we have a mandate to set examples both because it's the right thing to do and it's good business," Kemper says, adding consumers will look for some sort of quality benchmark and ignore sites that don't meet established standards.
"It's more than a PR ploy. We really do want to improve quality, and we all agree the status quo is not acceptable."
Web watchdogs applaud the industry leaders' efforts to develop standards, but they wonder whether an industry dominated by young, for-profit companies hungry to cash in on the rewards of a stock market gold rush can be trusted to police itself.
Little oversight of healthcare sites has occurred to date. The Food and Drug Administration and state attorneys general are going after some illegal online pharmacies, and the Federal Trade Commission and truth in advertising laws are beginning to reign in false advertising.
For the most part, however, the content on those 20,000-plus sites is uncontrolled and unregulated. According to a study in the August issue of the journal Cancer, more than 40% of healthcare sites contain information that has not been validated by a reliable medical source, such as the National Cancer Institute or the Centers for Disease Control. Web watchdogs say many sites do not disclose where their funding comes from and often blur the line between information and advertising.
The Hi-Ethics group first came together informally in October at a meeting convened by C. Everett Koop, M.D., to discuss drafting a code of ethics. Koop's name has generated more headlines in this area than any other. In September, Koop was criticized for not disclosing that he received a commission on products sold on his Web site and for occasionally blurring the line between advertising and content on the site. Koop has since terminated those endorsement deals and placed a message on his site stating that "Web sites have a profound responsibility to clearly delineate advertising from editorial."
In October, the Massachusetts Medical Society, which publishes the New England Journal of Medicine, found itself in hot water when The Wall Street Journal reported that a high-ranking society official owns a major stake in the Internet company that has the exclusive rights to the online consumer version of the New England Journal. Former trustee Barry Manuel, M.D., and his Burlington, Mass.-based company HealthGate Data stand to make millions from the deal.
In November, Manuel resigned from the MMS committee searching for a new editor of the New England Journal, saying his presence on the committee would be a "distraction," while others said his presence was inappropriate because his investment in the Web site could influence his choice of editor.
The society terminated the tenure of former editor Jerome Kassirer, M.D., this spring after he disagreed with the society's plans to market products and consumer publications--including Web sites--using the Journal's name.
This summer, InteliHealth, the Web site of Johns Hopkins University, was criticized by Sidney Wolfe, M.D., director of the consumer watchdog group Public Citizen, for posting very inaccurate drug information.
InteliHealth is a joint venture of Hopkins and insurance giant Aetna U.S. Healthcare.
Wolfe says that the site included information about the nighttime heartburn drug cisapride and that the site advised no special problems are associated with the drug if it is used exactly as prescribed.
"There have been 38 reports of death from heart rhythm disturbance, including several in children, associated with the use of cisapride," he says, adding the drug's label clearly states the safety and effectiveness of the drug in pediatric patients has not been established.
InteliHealth since has pulled the information off its site.
Policing healthcare information sites can fall into a regulatory gray zone, but Wolfe says: "It's not gray if the information is wrong. Then it's not safe."
InteliHealth displays the logo of the Health on the Net Foundation on its site.
The Swiss-based, not-for-profit foundation has developed the only voluntary code of conduct for health sites. Sites that display the foundation's logo fill out an application, then can display the seal for free indefinitely, but no one verifies that the site is actually following the code. A number of popular sites, including drkoop.com, display the logo.
The foundation code of conduct includes these principles:
- Medical or health advice will be given by qualified professionals, unless stated otherwise.
- The information provided is to support, not replace, the physician-patient relationship.
- Support for the site will be clearly identified.
- If advertising is a source of funding, it will be clearly stated, and the Web site's advertising policy will be displayed.
The Internet Healthcare Coalition, a not-for-profit organization that identifies and promotes quality Internet resources, supports the foundation's principles but also is working to develop its own industry standards. The coalition will host an e-health ethics summit in February in Washington that will bring together representatives from for-profit, government, education and not-for-profit organizations. It hopes to have a set of principles ready by the end of next year. This organization is attempting to implement wide-ranging codes to encompass several healthcare areas. Hi-Ethics is focusing on commercial Web sites. "Ethical conduct does not happen by accident," says coalition chairwoman Helga Rippen.
In the meantime, the coalition has compiled a list of Web-surfing tips and is encouraging physicians to pass the tips on to their patients. The list is available at their Web site at www.ihc.net/content/tips.html.
George Lundberg, M.D., editor in chief of Medscape, is working with both the coalition and Hi-Ethics and points to clinical medical journals as an example of how voluntary standards can work.
"The essence of professionalism is self-governance," he says. "Just as the International Committee of Medical Journal Editors, founded in 1978, has set the standards for how medical journal authors and editors should behave, the leaders of the e-health information enterprise should now set common standards for ethical behavior."
Adele Waller, a health law attorney who specializes in information technology at Bell, Boyd & Lloyd in Chicago, believes it's wishful thinking that all 20,000-plus sites will adhere to voluntary ethical standards.
"Some people have called the Internet the largest working anarchy, and I think that self-regulation will only regulate the small percentage of healthcare sites where the leadership cares about ethics," she says.
Many of the Hi-Ethics participants say Waller could be right, but it's up to the leaders to set a standard, and, more important, this starting point is better than nothing.
"Some people say there should be a body like the NCQA (the national managed care accrediting body)," says Beth Nash, M.D., chief medical officer of Tarrytown, N.Y.-based Physicians Online- Mediconsult.com. "That may happen down the line, but for now the feeling is we're all professionals and we can develop voluntary standards."
Kemper agrees that some outside oversight may be necessary down the road, but "first we need to establish what are the principles that everyone should subscribe to, then we look to who should enforce it."