Abstracts

The Epilepsy Service at Massachusetts General Hospital (MGH) has created an online health resource, PatientWeb, for epilepsy patients at MGH and the Brigham and Womens Hospital. The PatientWeb project employs an online bulletin board, which enables patients to communicate with each other and their physicians and to have access to validated health information online. The site was developed based on feedback from patients of the epilepsy ambulatory clinic and on an analysis of the MGH public Neurology Web-forums. Five years after first implementing PatientWeb, we compare the content of a PatientWeb online discussion about coping with the impact of epilepsy on studying, to similar information offered by larger, public websites. We hypothesized that the patient discussion would differ in content, but also in the manner in which information was relayed.
We prepared an article based on the main points extracted from a PatientWeb discussion titled [ldquo]Studying Tips in College[rdquo]. This discussion was initiated by a patient in February 2003. It continues to the present date with nine participants including a physician and study staff member. We compared the information extracted from this discussion to text from ten large and commonly referenced sites containing information on epilepsy. These sites were selected from http://www.medlineplus.gov, http://www.healthfinder.gov, and http://www.mlanet.org, which the Medical Library Association: Users Guide to Finding and Evaluating Health Information on the Web suggests relay a selective list of reliable health information sites that medical librarians trust. Their commonly referenced sites constitute seven sites on our list. The rest were selected using a search engine that patients typically use, http://www.google.com.
Four main points were made during the patient discussion. Only one site addressed all four of these issues. This site reiterated each point that our patients considered essential for studying in college. One of the sites was either biased toward professionals rather than patients, consequently offering little support-oriented information. Another was too general and presented information about how to deal with seizure occurrence at school, financial aid, legal issues and other information. Still others offered informative diagnostic material, but little practical or supportive content. Those that contained patient-support and practical material has not comments related specifically to overcoming the problems someone with epilepsy actually faces when trying to study.
This single comparison suggests that the patient perspective may differ from physicians. Though the selected sites are informative regarding general diagnostic and treatment topics, they contain little help with the problems faced on a daily basis by those with epilepsy. We suggest that patients should be more involved in writing material intended for them.
[Supported by: National Library of Medicine]