I’ve mentioned once or twice on this blog that I’m starting to do research in Lyme disease. I had presented very early versions of this work at ILADS 2009 (in an open forum) but Sunday was my first opportunity to present it formally, in the context of a research workshop called the Workshop on Interactive Systems in Healthcare (WISH 2010).
The work I presented was based on a survey of 128 individuals with Lyme disease, from across the country, along with interviews with 21 of those people. We have far more to say about the data than I can fit here, or in the summary paper and slides we presented. But what differentiated this work from much of the other work presented at WISH was its focus on the patient viewpoint, the patient use of data, and how we can facilitate that. A lot of related studies seem to focus on a broken patient process or simply about doctors.
