Studying ulcerative colitis over the World Wide Web.

OBJECTIVES

The Internet may provide a cost-effective means to collect outcomes data needed to improve the quality and efficiency of medical care. We explored the feasibility and methodology of a longitudinal outcomes study of Internet users who have ulcerative colitis (UC).

METHODS

We created an open-enrollment electronic survey of Internet users who have UC and recorded the number of respondents, their demographics, and their willingness to participate.

RESULTS

In a 2-month period, 582 users browsed the survey, 172 (30%) completed the questionnaire, and 162 (95%) reported willingness to enroll this study. Eighty-three percent were willing to release their medical records to verify their diagnosis. Most (> 70%) had the same E-mail address over 2 yr, suggesting that long-term follow-up could be performed electronically. In comparison with the male predominance of Internet users, respondents had gender distribution similar to that of patients who have UC. In comparison with the general population, respondents have higher education and higher household income.

CONCLUSIONS

The Internet community could serve as a resource for general population outcome studies. Selection bias due to limited availability and use of the networked computers may affect results. The Internet community, however, is expanding rapidly, so it should become more representative of the general population.