The World Wide Web and Birth Defects Prevention
W. Wertelecki, M.D.
The World Wide Web applications (henceforth referred to as Web) represent a veritable revolution that has permeated all aspects of communications. It is estimated that one million pages are added daily to the several billions of pages already accessible electronically. The Web is rapidly becoming a global and essential communication tool. The high prevalence of English-speaking users, 90% a few years ago, will drop to 51% by 2002 according to some estimates, a reflection of the increasingly global impact of the Web. In essence, the Web empowers millions of individuals and thousands of organizations to be at once, authors, editors, publishers, and distributors of ideals and information.
In general terms, the effectiveness of a Web site is a reflection of two factors, its contents and its accessibility. Access, as used here, denotes those steps needed to insure that a Web site will be found by those who are searching for them. Relatedly, we allude here to the development of the contents and accessibility of the World Alliance of Organizations for the Prevention of Birth Defects (WAOPBD) Web site. In the interest of clarity, we also allude to the Web site of the Ukrainian Birth Defects Prevention Alliance (henceforth called Ukrainian Alliance) because it is virtually the first WAOPBD member organization to emulate its ideals further described in a companion article. We also allude to the Web site of the International Birth Defects Information Systems or IBIS because it serves as a complement site to that of the Ukrainian Alliance and it may serve a similar purpose for the WAOPBD site.
The information contents of the (WAOPBD) Web site are divided into compartments, each composed of a variety and number of pages. The features of the English version of the WAOPBD Web site "home page" are shown in Figure 1. (1) There also are versions in Spanish, Ukrainian, and Russian. An array of "click keys" provide links to various realms describing the WAOPBD. Other keys provide links to realms of interest to those who seek general information about birth defects (BD). In contrast to the first group of keys that link to "WAOPBD specific" information, the latter link with pages already developed by IBIS, a labor saving strategy. (2) In addition, the home page provides other "WAOPBD specific" links, describing declarations and other events sponsored by the organization. The Web site is enriched by links to the March of Dimes (MOD) and to other select groups of Web sites focused on BD.
Figure 1. Home
page of the Web site of the World Alliance of Organizations for the Prevention
of Birth Defects.
The WAOPBD has only recently become incorporated and is likely to rapidly evolve and grow. Concurrently, changes of its Web site should be anticipated. Examples of likely issues to be considered by the WAOPBD leaders in the near future are outlined in Table I.
Table I. Some Examples of Web site Issues for Consideration by WAOPBD Leaders.
Define desired "visitors" to the Web site
Define Web site features that benefit members:
Scope of multi-lingual versions
Consider modes of interactions with members and visitors; e-mail, bulletin board.
Site Promotion Strategies:
Banner Exchange Policy
Granting WAOPBD Awards to be displayed on pages of "winning" BD Web sites
The design of the Web site of the Ukrainian Alliance is quite similar to that of the WAOPBD. (3) However, and obviously, the contents in the case of Ukrainian Alliance are mostly focused on its programs in Ukraine. (Figure 2). To meet information needs about specific BD, the Ukrainian Alliance relies on links with IBIS. In this regard, IBIS, represents a Web site offering a compilation of carefully selected BD information sources. In contrast to WAOPBD and the Ukrainian Alliance, which represent organizations, IBIS is a not-for-profit consortium of individuals who share their experience with the Web and develop as needed, new information resources for posting. (4) Indeed, although much information is already available from the Web, to find dependable information is another matter. Costs of Internet use in Ukraine are steep and are increased by limited skills of Web searching. Ukrainian colleagues benefit by using IBIS by reaching reliable information sources faster. Because BD information in Ukrainian was not found, the void was filled by Ukrainian contributors and is now a component of IBIS. The Ukrainian Alliance gratefully acknowledges the permission of MOD to use its materials for applications in Ukraine.
Figure 2. Home page of the Ukrainian Alliance for the Prevention of Birth
Some categorize IBIS as a "portal", a name for Web sites akin to the well known Yahoo site, which provide links but lack contents of their own. Such characterization of IBIS is incorrect. When information is not found on the Web, as was the case with BD information in Ukrainian, IBIS seeks authors to fill voids and post such original materials on its site. Authors retain ownership of their contributions posted on IBIS. All information linked to or posted on IBIS adheres to the recommendations of the American Medical Association and the "Health On the Net Foundation" or HONcode. (5,6) An extract of the criteria applied to select Web links for IBIS are shown in Table II*. Currently, IBIS offers over 3500 links to Web sites and fact sheets (FS), many in non-English.
Table II. Highlights of Selection Criteria for Contents in IBIS
Transparency: show authors
Attribution: show sources
Authority: display training and qualifications
Contents: review contents, show excerpts, point out limitations
Currency: display posting/revision dates
Sponsors: show "ownership" (commercial, non-commercial )
Advertising: avoid or otherwise note advertised Web sites
Privacy: insure confidentiality of site "visitors"
The English version of the "home pages" of IBIS is shown in Figure 3. Versions in Spanish, Ukrainian, and Russian also exist. The information domains cluster in three columns: the left column presents IBIS related issues; the right column displays advocates-sponsors; and the central column provides access to informational channels as well as links to the WAOPBD, MOD, and other leading BD oriented organizations.
Figure 3. Home page of I.B.I.S. (International Birth Defects of Information
In essence, IBIS offers a labor saving alternative to developers of Web sites concerned with BD. As in the case of the WAOPBD, other Web site developers may concentrate on contents dealing with regional or organization specific matters and resolve global questions regarding BD, by providing linkages with IBIS. Some emerging Web sites in Latin America are contemplating using this approach.
In addition to content, the accessibility of the WAOPBD Web site is another gauge of its potential utility. The simplest promotion of the site is to distribute its address by conventional means. As membership of organizations belonging to the WAOPBD grows, so will grow the number of users aware of its site. A policy promoting the need to disseminate the Web site address of the WAOPBD to all members of associated organizations. For instance, all members of the Ukrainian Alliance should be aware how to reach the WAOPBD site. Another relatively simple strategy is to capture "visitors" who are exploring other Web sites. This strategy requires that the WAOPBD induce other organizations to post links or banners to its site. This is already the case with the Ukrainian Alliance and IBIS and could be the case with the MOD and other member organizations. Finally, "visitors" to the Web site can be attracted by strategies to achieve high ranks from various Web search engines. The implementation of this strategy is complex, labor intensive and likely to be the least effective. Among the reasons are the need to develop content pages with features attune to Web search engines scoring criteria. In addition, most interested public and professionals tend to search the Web using key words of greater specificity than "birth defects". In short, the process to attune WAOPBD contents suitable to this strategy can be deferred for later implementations.
The development of the initial contents of the WAOPBD Web site has been completed. (1) Reactions from WAOPBD members and public visiting the Web site will provide input for ongoing refinements. Concurrently, it is desirable that the WAOPBD leadership promote the exchange of links and banners with other kin organizations.
The author wishes to express his gratitude on behalf of the WAOPBD for financial support provided by the March of Dimes Birth Defects Foundation to make these developments possible.
1. World Alliance of Organizations for the Prevention of Birth Defects.
2. International Birth Defects Information Systems (I.B.I.S.).
3. Ukrainian Alliance for the Prevention of Birth Defects.
4. I.B.I.S. offers
5. HON Code of Conduct (HONcode) for medical and health Web sites.
6. Guidelines for Medical and Health Information Sites on the Internet. Principles Governing AMA Web
Figure 1. Home page of the Web site of the World Alliance of Organizations for the Prevention of Birth Defects.
Figure 2. Home page of the Ukrainian Alliance for the Prevention of Birth Defects.
Figure 3. Home page of I.B.I.S. (International Birth Defects of Information Systems).