Patient Stories

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.

Our study included primarily people who had successfully navigated the Lyme space. We have a lot to learn from the success stories. Our participants were sophisticated with respect to their use of online content, and often activists or volunteers who were doing their best to help others with Lyme disease.

Online information can be confusing and contradictory, but successful strategies used by our participants included triangulating information by checking for corroboration in multiple settings and also stepping back from online information when they sensed that it was not helpful or even depressing.

I am grateful to everyone who contributed to this study, despite the many draws on their time in coping with a chronic illness. I hope we will be able to use these results to build better search tools and other support for the types of strategies we found. But the thing that touched me the most was the activism and volunteerism present in the community. We all benefit from those efforts, and to see them over and over again despite the tremendous energy it takes to simply get through this illness is truly inspiring.

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