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Related Experiment Videos

Studying ulcerative colitis over the World Wide Web

R M Soetikno1, D Provenzale, L A Lenert

  • 1Department of Medicine, Stanford University School of Medicine, California, USA.

The American Journal of Gastroenterology
|March 1, 1997
PubMed
Summary
This summary is machine-generated.

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The Internet is a feasible tool for collecting ulcerative colitis (UC) patient outcomes data. While some selection bias exists, the expanding online population offers a valuable resource for future general population studies.

Area of Science:

  • Medical Informatics
  • Gastroenterology
  • Health Services Research

Background:

  • The Internet offers a potentially cost-effective method for collecting medical outcomes data.
  • Improving the quality and efficiency of medical care relies on robust outcomes data.
  • Longitudinal studies are crucial for understanding disease progression and treatment effectiveness.

Purpose of the Study:

  • To assess the feasibility and methodology of conducting a longitudinal outcomes study using Internet users with ulcerative colitis (UC).
  • To determine the willingness of UC patients recruited online to participate in outcomes research and data verification.
  • To evaluate the potential for electronic long-term follow-up in a patient population.

Main Methods:

  • An open-enrollment electronic survey was developed for Internet users diagnosed with UC.

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  • Data collected included respondent numbers, demographics, and willingness to participate in a longitudinal study.
  • Willingness to release medical records for diagnosis verification was also assessed.

    • Main Results:

    • Out of 582 users who browsed the survey, 172 (30%) completed it, with 95% willing to enroll.
    • Eighty-three percent of respondents agreed to medical record release for diagnosis verification.
    • Over 70% maintained the same email address for over two years, indicating potential for electronic follow-up.
    • Respondent demographics showed a gender distribution similar to UC patients, but higher education and income compared to the general population.

    Conclusions:

    • The Internet community can serve as a valuable resource for general population outcomes studies.
    • Potential selection bias exists due to disparities in Internet access and usage.
    • The rapidly expanding and diversifying Internet user base is expected to become increasingly representative of the general population over time.