An analysis of personal medical information disclosed in youtube videos created by patients with multiple sclerosis

Luis Fernandez, Najeed Elahi, Francisco J. Grajales

Research output: Chapter in Book/Report/Conference proceedingConference contribution

38 Citations (Scopus)

Abstract

The Internet has become one of the main sources of health information. Today, content generation is no longer limited to the healthcare professionals of the late nineties; Web 2.0 services and platforms have empowered patients to create and interact with various forms of Patient-Generated Content (PGC); these include: videos, blogs, and social networking pages, among others. This investigation evaluated the characteristics of PGC found within YouTube video comments. We selected a random sample of 25 out of 769 Multiple Sclerosis patient-generated videos and analyzed their corresponding 557 comments for health information. 320 comments met the inclusion criteria and 70 contained personal health information (PHI). Comments with PHI were sub-characterized for the type of medical information (i.e., diagnosis, date of diagnosis, medication, among others). In this descriptive study, we present the strata within this content and postulate some of the corresponding patient risks and ethical challenges associated with PGC found in YouTube video comments.

Original languageEnglish
Title of host publicationMedical Informatics in a United and Healthy Europe - Proceedings of MIE 2009: The 22nd International Congress of the European Federation for Medical Informatics
Pages292-296
Number of pages5
Volume150
DOIs
Publication statusPublished - 2009
Externally publishedYes
Event22nd International Conference on Medical Informatics Europe, MIE 2009 - Sarajevo, Bosnia and Herzegovina
Duration: 30 Aug 20092 Sep 2009

Other

Other22nd International Conference on Medical Informatics Europe, MIE 2009
CountryBosnia and Herzegovina
CitySarajevo
Period30/8/092/9/09

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Keywords

  • Health information
  • Patient-generated content
  • Privacy
  • Web 2.0
  • Youtube

ASJC Scopus subject areas

  • Biomedical Engineering
  • Health Informatics
  • Health Information Management

Cite this

Fernandez, L., Elahi, N., & Grajales, F. J. (2009). An analysis of personal medical information disclosed in youtube videos created by patients with multiple sclerosis. In Medical Informatics in a United and Healthy Europe - Proceedings of MIE 2009: The 22nd International Congress of the European Federation for Medical Informatics (Vol. 150, pp. 292-296) https://doi.org/10.3233/978-1-60750-044-5-292