This site has been last updated January 28, 2012.
Chronic illness is defined as an illness or disease that is long-term or permanent, as opposed to acute. For many individuals living with a chronic condition, the web has served as an important medium for researching treatment options, developing a support network, and sharing information and experiences with others (Eysenbach, 2003).
Our purpose is to learn about how individuals with chronic illness, and their caregivers, use resources available online. Such resources include sites offering medical information as well as research and experience blogs, forums, and others.
Currently, we are focusing our work on individuals with Lyme disease. Because this illness is disputed in both diagnosis and treatment methods among healthcare professionals (Weintraub, 2008), individuals with Lyme disease depend on online advocacy and activism to manage their condition. At the same time, divergent and conflicting information is common online. How does this affect the experience and outcomes for individuals with Lyme disease?
Work on these studies has begun in the beginning of 2009 by a team of researchers at the Human-Computer Interaction Institute at Carnegie Mellon University (Pittsburgh, PA).
- Ethnographic Study of How Individuals with Lyme Disease Leverage the Social Web [Pittsburgh Post Gazette article about the work; Publication about the work at CHI 2011]
- Understanding and Predicting Online Health Resource Viewpoints
- Qualitative Study of How Online Communities Create Cognitively Accessible Content [Published as a poster at ASSETS’09]
- Glanz, Rimer, Lewis. Health Behavior and Health Education. 2002.
- Weintraub. Cure Unknown: Inside the Lyme Epidemic. 2008.
- Hammersley, Atkinson. Ethnography: Principles in Practice. 1995.
- Pirolli. Information Foraging Theory: Adaptive Interaction with Information. 2007.
- See the rest of our library of current related work…
- …as well as various thoughts and notes we made on other readings and existing applications in our research journal
Support for this project
Funding for this project comes from NSF IIS-0916459 (Helping People Negotiate Uncertain Information Online) and Google (Helping people find health resources online)