An insight into rheumatology resources available on the World Wide Web (http://www.ilar.org)

R. Armstrong, H. Rasker 1 and J. Dequeker2

Rheumatology Unit, Southampton General Hospital, Shirley, Southampton SO16 6YD, UK,
1 University of Twente, Department of Rheumatology and Psychology, PO Box 217, 7500 AE Enschede, The Netherlands and
2 Rheumatology Unit, University Hospital, K.U. Leuven, B-3212 Pellenberg, Belgium

SIR, We read with interest the paper by Tench et al. [1]. This raises some interesting points in relation to the dissemination of information about rheumatology via the World Wide Web (WWW). The figures in their paper presumably relate to their work carried out prior to the initial submission date in November 1997, but the Internet is expanding rapidly. Using the same search engines now (December 1998), the total number of links to other sites which are given following entry of the same key word, `rheumatology', is 5978, an increase of 213%. The authors point out that members of the public who are seeking information about rheumatic diseases would probably use some other key word as the basis for the search. This may result in an even greater deluge of information, depending on the key word being used (Table 1Go).


View this table:
[in this window]
[in a new window]
 
TABLE 1.  Numbers of links generated on entry to the specified key word in the search engines listed
 
As has been observed by many others, this creates difficulties for those who are familiar with the subject area, let alone the general public. Patients have always been free to seek information about their health, but prior to the availability of the WWW, access to information in the public domain was largely via the public library. The information available then was mainly controlled by the large publishing houses. Two main features of the WWW have radically changed the situation: firstly, the ease with which large quantities of information may be accessed and, secondly, the fact that anyone may instantly publish virtually anything to a planet-wide audience at minimal cost and with no need to ensure the veracity of the published material. There has been much discussion about this and novel means have been suggested to ensure that the user is guaranteed a certain quality of content when seeking information on WWW sites [2]. However, such innovations are not yet on the horizon and there is also still debate as to whether health-related information accessed on the WWW can actually be harmful [3]. A number of sites carry a variety of logos suggesting that an award has been donated to denote above-average quality. These awards are of questionable value [4]. It is seldom evident whether those who make the awards have any relevant qualifications to permit their bestowal. Their motives sometimes seem less to do with altruism than an effort to generate traffic for their own sites.

The sight of a patient entering the consulting room clutching a sheaf of printouts from the Internet is likely to become even more familiar than it is now. To many doctors, especially those to whom the Internet is still foreign territory, this vision may cause the heart to sink. A dismissive attitude to such activity on the part of the patient does not make for an ideal doctor–patient relationship and so, rather than seeing this situation as a threat, we suggest that it be treated as an opportunity. By enlisting the support of the WWW, the doctor may even improve the quality of the consultation and subsequent management. For the majority of doctors, this does not necessarily entail familiarity with the WWW. Simply providing the patient with a relevant WWW site address may be sufficient. The authors have mentioned a small number of high-quality sites in their paper. We would like to draw your readers' attention to the International League of Associations for Rheumatology (ILAR) WWW site (http://www.ilar.org). This is an entirely non-commercial site and, in addition to information about the organization and its activities, it contains lists of links to national and regional rheumatology organizations and selected WWW sites dealing with various rheumatological topics. These are grouped in various categories: education, patient organizations, rheumatology journals, rheumatology foundations and so on. The sites to which we have created links have been considered to be more informative and accurate than many others dealing with similar topics. As ILAR is a worldwide rheumatology organization, it seems entirely appropriate to adopt this means of fostering international links and disseminating information.

Patients and students of rheumatology may flounder in a sea of information and misinformation on the Web. Who better to help guide them through it than rheumatologists? Is this not partly our responsibility? We welcome constructive suggestions about the content of our site and especially about other sites to which we should create links.

References

  1. Tench CM, Clunie GPR, Dacre J, Peacock A. An insight into rheumatology resources available on the World Wide Web. Br J Rheumatol 1998;37:1233–5.[ISI][Medline]
  2.  Eysenbach G, Diepgen TL. Towards quality management of medical information on the internet: evaluation, labelling, and filtering of information. Br Med J 1998;317:1496–502.[Free Full Text]
  3.  Wyatt JC. Commentary: measuring quality and impact of the world wide web. Br Med J 1997;314:1879–81.[Free Full Text]
  4.  Jadad AR, Gagliardi A. Rating health information on the Internet: navigating to knowledge or to Babel? J Am Med Assoc 1998;279:611–4.[Abstract/Free Full Text]
Accepted 19 February 1999