Developing rules for the Web

Concern over how health information is presented on the Internet has prompted several groups to step up to the challenge of developing ethics for medical sites.

By Vida Foubister, AMNews staff. July 31, 2000. Additional information

After DrKoop.com was found to be blurring the lines between editorial content and advertising, Dr. Koop the physician called on the large, U.S.-based health dot.coms to develop a code of ethics.

The result of the call to action by former U.S. Surgeon General C. Everett Koop, MD, was a group representing 20 of these Web sites -- called Hi-Ethics for Health Internet Ethics -- that released a set of 14 ethical principles May 8."The goal is simply to earn the trust and respect of the user," said Donald W. Kemper, chair of Hi-Ethics and CEO of Healthwise Inc.

But the Hi-Ethics code isn't the only set of ethical standards developed for medical and health Web sites.

The AMA published its own guidelines in the March 22/29 issue of the Journal of the American Medical Association. At the urging of former JAMA Editor George D. Lundberg, MD, the Internet Healthcare Coalition's eHealth Ethics Initiative released an international code of ethics May 24. And a Geneva-based nonprofit group developed a code of conduct in 1996 that now has about 3,000 Web sites in 36 countries as subscribers.

So far, this flurry of activity to regulate medicine on the Internet appears to be raising more questions than answers. Chief among them are which code is the "real" code of medical ethics and who will certify that Web sites espousing these principles are in fact complying with them.

Working together

It is true that the Internet Healthcare Coalition's eHealth effort included members of the Health On the Net Foundation -- the Geneva-based group, Hi-Ethics and the AMA. These groups also have talked about coalescing their efforts.

But no one has committed to working toward one common set of ethical principles to address issues including privacy, conflict-of-interest, disclosure and quality of content.

"There's a great deal of talk but so far no action on working toward a single global code," said Tim Nater, executive director of HON Foundation. "That to me is the Holy Grail."

The holders of the ethics codes have not yet decided how to reach this goal. While some suggest adopting one universal code, others want to simply coordinate the current efforts.

"We believe that the eHealth Code of Ethics is really the internationally universal code of expectations for behavior," said Helga E. Rippen, MD, PhD, MPH, co-chair of the eHealth Ethics Initiative and chair of the Internet Healthcare Coalition.

Buoying this claim is the IHC's involvement of 60 diverse representatives in its eHealth summit, and an opportunity for public comment on its draft code.

"I thought it might be an effort by the large dot-coms to do something self-serving," admitted Thomas Murray, PhD, president of The Hastings Center in Garrison, N.Y. "The first surprise was the diversity and intensity of the participants; the second was that they wanted a very rigorous code."

Hi-Ethics members look to the eHealth code as being global in scope and universally applicable. They also see it playing a valuable role as an "aspirational code."

"We always think you should aspire to higher, nobler good, but in actuality some of the things may not be implementable," said Michael J. Rozen, MD, vice president of consumer affairs for WellMed Inc.

Hi-Ethics hopes to work with the Federal Trade Commission to ensure that subscribers adhere to its code, which is focused on U.S. dot-coms. "The Hi-Ethics code is very closely tied to U.S.-based law," Kemper said.

JAMA's guidelines were developed to set the standard for AMA Web sites. But the authors encourage other interested Web sites to use the guidelines voluntarily, and they plan to continue reviewing their use by others. "It's too early in the evolution of the Internet to say that we know exactly what the one set of guidelines should be," said Margaret A. Winker, MD, JAMA deputy editor and director of scientific online resources.

The HON Foundation also isn't going to quickly defer to the eHealth code, which still must be implemented. "Basically, they need subscribers, and the subscribers will need an argument why they should drop the HON code and go with them," Nater said.

Questionable credibility

Credibility, not surprisingly, is a key issue to those developing ethical standards for medical Web sites.

"We really think that on the health Internet the three most important principles of success are trust, trust, trust," Kemper said. "If the consumer doesn't trust you, they're not going to use the site; if the doctor doesn't trust you, they're not going to send their patients there; and if the regulators don't trust you, they are going to put you out of business."

But the process that's being used to develop that trust doesn't pass muster with at least one bioethicist. Glenn McGee, PhD, a professor of bioethics at the University of Pennsylvania School of Medicine and the director of bioethics.net, sees the Hi-Ethics and IHC efforts as self-inclusive and thus lacking in objectivity. Further, he said, there needs to be research on how consumers perceive information contained on health sites before an effective code can be developed.

"The health world is used to peer review, which is an extraordinarily rigorous form of regulation for what kind of information is available to patients or even to colleagues," Dr. McGee said. "Real peer review means thinking about and making rules with regard to conflict of interest, and that's where both of these codes fall pitifully short."

Jerome P. Kassirer, MD, editor-in-chief emeritus of the New England Journal of Medicine, finds for-profit medical Web sites problematic. Yet he doesn't think guidelines, while important, are enforceable.

"People are not stupid, and they will gravitate to those Web sites that have respected names," he said. "It's a free-market approach, but in this case the free-market approach is best."

Others also fear that stringent regulations and requirements would violate the democratic principle that governs the Internet. This is one area where the HON code has an advantage. It's short and concise, and can be adopted easily by small Web sites.

The HON code has a second advantage -- it, unlike Hi-Ethics and eHealth, already has been implemented. Subscribers, such as Catholic Healthcare West and the Joint Commission on Accreditation of Healthcare Organizations, display an active seal that links users to their registration information.

Hi-Ethics members have agreed to become compliant with their new guidelines by Nov. 1. Though Hi-Ethics intends to maintain control of its code, it plans to choose an independent group to certify whether its members uphold the standards. Because only a hundred or so U.S. sites are expected to meet its standard for membership, oversight like this might be possible.

Given their international scope, the HON and eHealth codes are unlikely to have much success policing adherence. HON Foundation, to some extent, depends on the reporting of violations by Web site users. In contrast, the IHC's eHealth initiative plans to have an independent implementation body in place evaluating sites a year from now. The IHC also plans to establish an ethics board to serve as the "keeper of the code."

"We don't want to necessarily own a code of ethics," Dr. Rippen explained. "What we do want to do is promote a standard."

Medicine's role

Among doctors who have Web sites for their practice are many who say these new standards shouldn't be applied to them.

"Ours is an educational and informational Web site," said Thomas Levin, MD, an interventional cardiologist in Chicago. "The ones that are promoting ecommerce are probably the ones that need to be regulated a little bit more."

Nancy W. Dickey, MD, editor-in-chief of Medem.com, launched last year by the AMA and several other medical groups, said that because Medem develops physician Web sites it should fall into that same category. "One of the differences is that these are individual physician Web sites generally intended to enhance the existing doctor-patient relationship, differentiating Medem sites from a site that is attempting to establish a relationship where one doesn't exist," she said.

But Alan Greene, MD, the creator of a popular pediatrics Web site that bears his name, said it doesn't take long for people who aren't your patients to land on a doctor's home page.

"When I started my Web site I was just thinking of giving great information to families [I treat], but very quickly other people started coming, and they're people who didn't know me," he said.

In addition, some physicians said current guidelines don't go far enough. They are looking to the AMA to set policy in areas that aren't covered by the JAMA guidelines -- the practice of medicine online.

Already, state legislatures and medical boards have begun setting standards that are inconsistent with the way medicine is currently practiced offline. Ohio, for example, has a blanket prohibition for Internet prescribing that doesn't take instances of prior physician-patient relationships into consideration.

"We're seeing in many cases a gut reaction to the Viagra-on-the-net-type sites," said Robert Waters, a partner at Arent Fox LLC in Washington, D.C. "If the professional groups and the ehealth telemedicine providers that are reputable and of high caliber don't get involved, the playing field will be determined by the regulator's response to a few bad apples."

Right now, the AMA Council on Ethical and Judicial Affairs appears to be leading the Association's response to the move of the physician-patient relationship online.

"We're trying to evaluate what are the essential elements of the doctor-patient relationship so that we can apply them in the areas where new technology seems to redefine it," said CEJA Chair Herbert Rakatansky, MD. "We want to make sure that we don't shortchange the patients and that they are still getting true professional medical care."

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HON CODE OF CONDUCT

Organization: Health On theNet Foundation, Geneva
Date released: July 1996
Scope: international, content only
Certification status: Active
Web site: http://www.hon.ch/HONcode/

MODEL PRIVACY STATEMENT

Organization: TRUSTe, Cupertino, Calif.
Date released: June 10, 1997
Scope: international, privacy generally
Certification status: Active
Web site: http://www.truste.org/

VERIFIED INTERNET PHARMACY PRACTICE SITES CERTIFICATION

Organization: National Assn. of Boards of Pharmacy, Park Ridge, Ill.
Date released: June 1999
Scope: international, pharmacies
Status: Active
Web site: http://www.nabp.net/vipps/intro.asp

ETHICAL PRINCIPLES FOR OFFERING INTERNET SERVICES TO CONSUMERS

Organization: Hi-Ethics or Health Internet Ethics
Date released: May 8, 2000
Scope: large, U.S.-based health dot.coms, largely content
Certification status: Not yet developed
Web site: http://www.hiethics.com/

GUIDELINES FOR AMA WEB SITES

Organization: JAMA
Date released: March 21, 2000
Scope: AMA, largely content
Certification status: Not yet developed
Web site: http://pubs.ama-assn.org/ama_web.html

eHEALTH CODE OF ETHICS

Organization: Internet Healthcare Coalition, Washington, D.C.
Date released: May 24, 2000
Scope: international, content and practice of medicine
Certification status: Not yet developed
Web site: http://www.ihc.net/ethics/ehcode.html

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