World wide web: opportunities, challenges, and threats

Area of Science:

• Medical informatics
• Rheumatology
• Clinical trial methodology

Background:

• The Internet and World Wide Web (WWW) have expanded, presenting new avenues for population data collection.
• Traditional clinical trial methods for systemic lupus erythematosus (SLE) may be supplemented or replaced by Internet-based approaches.
• The increasing number of Internet users necessitates exploring its potential in medical research.

Purpose of the Study:

• To explore the opportunities and challenges of using the Internet for clinical trials in systemic lupus erythematosus.
• To identify potential benefits, such as patient notification, recruitment, and assessment.
• To highlight critical considerations including sampling bias, data reliability, and patient confidentiality.

Main Methods:

• Review of current Internet capabilities for patient engagement in research.
• Discussion of potential biases related to Internet access (e.g., socioeconomic status, neurological deficits).
• Analysis of data reliability and psychometric properties of web-based information.
• Examination of security and confidentiality concerns for electronic patient data.

Main Results:

• The Internet can facilitate patient notification, recruitment, and assessment in SLE studies.
• Potential for biased sampling exists, disproportionately affecting individuals with limited Internet access.
• Concerns regarding data reliability and the need for psychometric validation of web-collected data.
• Protecting patient confidentiality during electronic communication is a significant challenge requiring robust safeguards.

Conclusions:

• The Internet presents a valuable tool for SLE clinical trials, but its use requires careful management of potential biases and data security risks.
• Balancing security measures with necessary access is essential for effective implementation.
• Clinicians and researchers must stay informed about the rapidly growing online resources for lupus research.