Using One’s Own Experience and Body for Research Alongside Others’ Narratives: Challenges, Advantages, and Learning Points

Abstract

Although there is an increasing emphasis on patient involvement in healthcare research, in practice, there are a number of obstacles to patients who wish to lead their own studies into their disability or illness.

This case study describes the journey of a user-researcher from initial idea through to write-up, cataloguing the advantages and disadvantages of being a pioneer in a field that is rarely studied by patients themselves. It discusses existing approaches to patient involvement and the value of accessing “expertise by experience“ to design and conduct research. It offers practical advice for recognizing and overcoming hidden obstacles, and illustrates three different approaches to analyzing personal and whole-body observational data alongside data from standard observation and interview methods. Finally, it notes ethical considerations associated with using one's own experience as part of an in-depth study.

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