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. The purpose of this project has been 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.

I worked on this project while an undergraduate for two summers (and in-between) with Professor Jen Mankoff at Carnegie Mellon University Human-Computer Interaction Institute. I was able to work on this project through the support of the CRA-W DREU program, for which I journaled my experiences with undergraduate research. Through that program, I was also able to present this work at the Grace Hopper Celebration ’09.

A photo from the poster session @GHC accompanies a CRA-W article about the DREU program. I am on the left in the photo.

After, I continued on a related vein during my first year as a PhD student at the UW, as well. Since around the end of summer 2010, I have been working on and application for browsing, searching, and visualizing unedited patient-reported health data. This work will lead to studies of how different levels of information fidelity (e.g., “very little” has low fidelity; “2%” has higher fidelity; “213 out of 10304″ has an even higher fidelity) affects perceptions of usefulness and trustworthiness of online health data. Parts of this work have applications for organizing and visualizing search results in general.

In the Press

Full papers

J. Mankoff, K. Kuksenok, J. A. Rode, S. Kiesler & K. Waldman. Competing online viewpoints and models of chronic illness. In Proceedings of CHI 2011. (pdf)

Other publications

R. Gulotta, J. Mankoff, H. Faaste, K. Kuksenok. Ethical Challenges in Online Health Community Research. To appear at CHI 2011 workshop on Ethics, Logs, and Videotape.

K. Waldman; advised by K. Kuksenok and J. Mankoff. Use of Internet resources by individuals with Lyme Disease. RESNA 2010.

J. Mankoff, S. Kiesler, K. Kuksenok, and K. Waldman. Uncertainty in chronic illness and patients’ online experiences. In Proceedings of WISH workshop at CHI 2010

K. Kuksenok, J. Mankoff. End-user moderation of cognitive accessibility in online communities: Case study of brain fog in the Lyme community. In Proceedings of ASSETS 2009, pp. 233-234. (pdf)

K. Kuksenok, K. Waldman, J. Mankoff, S. Kiesler, and M.A. Sevick. Conflict and care: how conflict affects individuals with chronic illness. Grace Hopper Celebration 2009, Technical Poster