Promoting the benefits of the web: The Internet Healthcare Coalition
by Mark Boulding and John Mack
Try to imagine that an unscrupulous individual reads a magazine article about the use of a plant extract to treat cancer, then sets himself up in the business of selling the extract for use in injectable form. Several people die as a result of bacterial contamination of the injected product. Suddenly, the magazine publishing industry is in the news, with politicians calling health magazines dangerous and parents worrying that their children have access to them. All kinds of probing questions are asked: Is the publisher of the magazine liable? Should we regulate the magazine industry to prevent this kind of accident? Are magazines good or had for society? Should the FDA or other regulatory bodies step in with guidelines that apply to all health-related magazines?
Sound implausible? Just substitute the word "Internet" for "magazine" and you have a much more realistic scenario. Politicians, interest groups, and the press are already focusing on what they view as the dangers of the Internet in the healthcare area. We shouldn't be too surprised by this, because our society always scrutinizes the new more closely than the old. But we should be aware of the risk of overreacting out of fear or misunderstanding. It is an unfortunate fact that, historically, the arrival of new media like radio and television coincided with the creation of new regulations much more restrictive than those that applied to paper and ink. We stand today on the brink of a similar development for the Internet.
How do we avoid a rush to judgment that may cost us the benefits of this new medium? One way is to educate skeptics about the benefits of the Internet for patients, healthcare professionals, and the public. The Internet Healthcare Coalition, a nonprofit organization was founded with education as its explicit mission. By focusing on the good rather than the bad, the Coalition hopes to avoid the demonization of the Internet we have already seen in other areas.
Government did not seriously focus on regulation of the Internet until the mid-1990s. At that time, the unexpected growth in use of the Net - due largely to the popularity of the World Wide Web - moved the Internet from the province of academics and computer nerds into the public eye. The first targets were the usual suspects - child pornographers and computer hackers - and the best-known result was the Communications Decency Act, the core provisions of which the Supreme Court recently struck down as unconstitutional.
Lately, however, healthcare on the Net has received its share of negative press coverage and resulting government attention. In the fall of 1996, the Food and Drug Administration held a public meeting on use of the Internet by FDA-regulated entities. More recently, the Federal Trade Commission completed a field operation involving reviews of hundreds of health-related web sites. These activities are an early warning signal that healthcare on the Net may face new regulatory strictures in the future.
By itself, of course, regulation is not always bad. After the 1996 FDA meeting, however, a group of concerned individuals realized that the press and the governments of the U.S. and other countries had only a limited understanding of the nature of the Internet. This group, gathered on an Internet mailing list hosted by John Mack of VirSci Corporation (creator of the PharmlnfoNet web site), included healthcare professionals, medical publishers, web developers, patient representatives, academics, lawyers, public interest groups, members of the healthcare industry, and even the occasional government employee.
All involved were concerned that lack of information, coupled with consistently negative stories in the mainstream press, might lead government officials in various countries to adopt an aggressive approach toward online healthcare. The result of such regulation might not be in the best interests of patients, healthcare professionals, or health information providers. The online discussions also highlighted the absence of any one organization that spoke for the position that healthcare information on the Internet was a good thing.
To understand the tension between "good" and "bad" regulation, or even between "good" or "bad" standards, it helps to understand the diversity of creators and users of healthcare information on the Internet. Because the barriers to entry are low, the possible publishers of health-related web sites range all the way from individuals operating out of their own homes to multinational corporations. Likewise, the possible audience for a web site includes consumers, healthcare professionals, academics, government officials, and businesses.
How can one law or standard apply to all possible permutations of these speakers and their audience? Or, to view the issue from another perspective, how can one web site comply with many different laws (sometimes of different nations) intended to address many different problems? Even if government stays out of the picture in favor of independently developed standards, whose standards should be applied? A physician may have a very different view of a web site devoted to acupuncture than a devotee of Chinese traditional medicine. How can anyone decide which viewpoint is "correct"?
One possible answer is to empower the recipient of the information, rather than restricting the speaker. Time and time again in the online discussions, proposed limitations on access to information were criticized by potential consumers of the information: patients, consumers, and healthcare professionals. After all, their reasoning went, isn't the whole point of Internet access to provide information on a global scale? Gradually, a shared viewpoint emerged that educating information consumers was an important aspect of using the Internet for healthcare information. There was no inconsistency between education and standards, other than a recognition that different types of standards (or quality criteria) might be appropriate for different individuals. But as long as the individuals understood what they were getting, there seemed little reason to stand in the way of their getting it.
Formation of the IHC
At the first meeting of members of the online discussion group, held in Washington, D.C., in June of 1997, the group's consensus crystallized with the foundation of the Internet Healthcare Coalition (IHC). Formed with a view to preserving the diversity of the underlying interests involved, the Coalition includes patient representatives, medical publishers, web developers, healthcare professionals, nonprofit organizations, and industry representatives. Funding comes from membership and unrestricted donations, and the officers and directors (including the authors of this article) do not receive any compensation for their work with the Coalition.
Participants in the first Coalition meeting agreed on a draft Statement of Purpose, which identifies the four major points in THC's program:
Educating healthcare consumers, healthcare professionals, healthcare educators, healthcare marketers, and both healthcare and mainstream media, and public policymakers on the full range of uses of the Internet - current and potential - to deliver high-quality healthcare information and services.
Providing clear guidance for evaluating disparate sources of information from product- or disease-information sites developed by regulated manufacturers to peer-reviewed electronic publications to patient support and discussion groups.
Publicizing and promoting the usage of currently available resources that exemplify ethical, innovative, and high-quality uses of the Internet to deliver healthcare information and services, and encouraging development of new resources that do the same.
Acting as a representative of member constituencies in areas of common concern before public policymakers and with the media.
By adopting this statement of purpose, the Coalition hopes to promote the advantages of the Internet for healthcare.
From the moment of its creation, the Coalition played an important role in affecting governmental policies. Its representatives attended the World Health Organization's (WHO) meeting on healthcare on the Internet, and were an important voice in persuading WHO to adopt an education-based approach to online healthcare (rather than the direct regulatory approach some WHO members advocated). Other members of the Coalition have attended government meetings, spoken at public conferences, and developed written materials supporting the Coalition's goals.
Planned IHC activities
Currently, the Coalition is moving forward with programs on several fronts. For example, the Coalition has formed a working group to assemble a unified reference to entities that have jurisdiction over illegal or fraudulent online healthcare activities. Using this resource, consumers and healthcare professionals can identify the appropriate individuals to address complaints about such activities. The list, which will appear on the Coalition's web site (www.ihc.net), will be international in scope, and will include government agencies, consumer protection groups, and international and national organizations.
The Coalition also recognizes the likely emergence of self-regulatory systems that use standards or other criteria for quality of healthcare information. These systems may play an important role in persuading national governments to take a reasoned approach to online regulation. The Coalition itself does not plan to develop standards, both because of the many efforts that are already ongoing and because of its view that it may, as a practical matter, be impossible to develop a single standard that is appropriate for all audiences. However, it will play a role in facilitating discussions concerning standards or criteria for quality of information. As a complementary effort, members of the Coalition are preparing materials, to be distributed in print form and on the Internet, to help consumers understand what they should look for in online healthcare information.
Finally, the Coalition is planning a meeting, tentatively scheduled for the fall of 1998, in the Washington, D.C., area, at which key thought leaders in the healthcare industry, government representatives, healthcare professionals, and other interested parties can exchange views about the future of healthcare on the Internet.
It has been said that the price of liberty is eternal vigilance. To help preserve the benefits of the Internet for healthcare information, we must all think about what actions we can take to improve quality while maintaining freedom of access. An empowered consumer of information is the best solution we have found to preserving this dual objective. The Coalition welcomes any and all who share this viewpoint.
is a partner with the Washington DC office of the law firm of Long, Aldridge
& Norman, and a member of the board of directors and Secretary of the
Internet Healthcare Coalition. He may be reached at 701 Pennsylvania Avenue
NW, Suite 600, Washington, DC 20004; 202 624-1200; fax; 202 624-1298; e-mail
John Mack is president of VirSci, an Internet development and marketing company and serves as president and chair of the Internet Healthcare Coalition, as well as serving on its board. He may he reached at 2761 Trenton Road, Levittown, PA 19056; 215 949-0490; fax: 215 949-2594; e-mail: firstname.lastname@example.org.
©1996-98 Mark E. Boulding
Most recent update: November 1998