Health sites to develop ethics guidelines

At least two industry-sponsored efforts are under way to develop guidelines to protect consumers from untrustworthy Internet health sites.

By Tyler Chin, AMNews staff. Nov. 8, 1999.

To protect consumers and perhaps their own commercial interests, several prominent operators of medical and health Web sites are working to hammer out a set of ethical guidelines governing online advertising, content, sponsorship and privacy.

The efforts -- one initiated by drkoop.com and another by Medscape Inc. -- come on the heels of mounting public concern over the reliability of health information available on medical Web sites, the ways these sites use the personal data they collect from consumers and the fact that some electronic commerce activities are endangering consumers' health.

Given the growing maturity of the e-health sector, drkoop.com's namesake and chairman, C. Everett Koop, MD, believes "it is the right time to do this," said Stephanie Fulton, drkoop.com's director of marketing and communications.

"We're dealing with people's lives here, and we have to have trusted information. There need to be self-policing guidelines to provide the best information for consumers," she said.

Medical ethicists, patient advocates and others complain that a lot of online information is misleading and unreliable. Internet health companies aren't clearly distinguishing unbiased medical content from ads or promotional material, critics say. They also are failing to inform consumers about potential conflicts of interest stemming from the mixing of content and electronic commerce activities.

It was against this backdrop that Dr. Koop convened a meeting Oct. 12 in New York featuring some major players in the online medical arena. Dr. Koop was taking advantage of their attendance at Intel Corp.'s Internet Health Day conference. Intel has invested millions of dollars in Internet health care start-ups.

Concerned that potential ethical problems could give the entire e-health sector a black eye, the group agreed at the meeting to develop guidelines. The group consists of 10 Internet health firms, including drkoop.com, Medscape and InteliHealth Inc. Other firms declined to be publicly identified as participants, Fulton said. More companies may join the group, she added.

In a related development, George D. Lundberg, MD, Medscape editor in chief, has called on members of the Internet Healthcare Coalition to work on a different but broader-based effort to craft ethics guidelines for medical Web sites. IHC is an umbrella group whose members include for-profit companies, nonprofit organizations, medical communities, academia, advocacy groups and others providing Internet-based health care information and services worldwide.

Dr. Lundberg said he supports both efforts but thinks a broader-based effort "would be more likely to be good and widely accepted from the start."

The AMA developed guidelines for health Web sites several years ago in conjunction with the Food and Drug Administration. Those guidelines, which were adopted by the Assn. of Medical Publishers, are available on the AMA's Web site.

The drive for guidelines has begun as sites are criticized for ethical lapses or potentially criminal conduct:

• On Oct. 22, Illinois sued four online pharmacies and affiliated doctors, saying they had violated several state licensing and medical practice laws, placing consumers' health at risk. Illinois is the third state to file lawsuits targeting Internet prescription sites; Kansas and Missouri filed suits earlier this year. The Illinois suit was the first for which the AMA explicitly pledged its support.
• This past summer, a story in The New York Times said Dr. Koop, former U.S. surgeon general, had not disclosed that he had earned a percentage of sales from products sold over the drkoop.com Web site. The article also pointed out that the firm -- and Dr. Koop -- had not disclosed that health care facilities identified as "community partners" on the Web site had paid $40,000 to be included on the list.
• Around the same time, Women First Health Care was criticized in another media outlet for not disclosing financial ties with pharmaceutical companies whose products it sold over its Web site, womenfirst.com.

Both times, drkoop.com and Women First addressed criticisms.

Dr.koop.com spokeswoman Fulton said the negative publicity Dr. Koop had received this summer didn't play a role in his decision to urge competitors to develop ethics standards.

Of course, Internet firms stand to benefit financially if they inspire trust among consumers that content is unbiased; if they disclose potential conflicts of interest about content, products or services they sell; and if they don't misuse consumers' personal data.

"It's not necessarily clear from the companies' business strategy, but in theory they are out there to make money," said Ben Rooks, director of equity research at CIBC Oppenheimer's Chicago office.

Although Internet health companies aren't under pressure from Wall Street to adopt ethics standards, they have to move in that direction to assuage various public concerns, Rooks said. "They need to demonstrate that they are trustworthy because otherwise people start discounting the information they get, and that serves the interests of neither consumers nor [sites'] advertisers."

But Fulton said money was not the driving force in coming up with ethical guidelines. "I don't think anyone in the group thought of economic gain from doing this," she said. "The goal is to protect the consumer."

Executives at Medscape, InteliHealth Inc., drkoop.com and Mediconsult.com Inc. emphasized that they abide by self-developed policies. They also adhere to policies developed by other groups, but these external policies are broader in nature and don't entirely address ethical issues. Thus, there is a strong need for detailed and narrowly focused standards around which the industry can rally and that help consumers distinguish the wheat from the chaff.

"There are 15,000 or more [medical] Web sites, and it's important for the public to easily recognize which sites have a standard and which ones don't," said Ian Sutcliffe, president of Mediconsult.com, which is supporting IHC's ethics effort.

IHC plans to invite online providers of health and medical information, academia, medical communities, advocacy groups and government representatives to discuss the issue at a meeting it hopes to hold in early 2000. The coalition hopes to complete its guidelines by October 2000, said IHC President John Mack, who also is manager of professional community at Mediconsult.com.

The 10-member Web site group has not set a timetable for its effort, Fulton said. But at least one member hopes the work will be done quickly.

"We're [all] on Internet time," said Bob Pringle, president of InteliHealth, a joint venture between Aetna US Healthcare, Johns Hopkins University and Health System. "We don't want to do it so fast that we can't carefully and thoughtfully review the process, but it doesn't have to take a year."

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