Ethnographic Observation of Rare Disease Conferences: Learning from Experience

Abstract

Are conferences boring? Some are of course, but my experience in going to conferences has shown me how they can be really exciting places to research. One of the problems when you are new to this methodology is there are no guides to follow. Although many people attend conferences, few people have written about their research experiences. In this case study, I describe the scientific and support group conferences I attended as part of my ethnographic PhD project. I also discuss some of the practical decisions I made and the problems I encountered, including how to gain consent and from whom, how to get involved in the event and how to record data.

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