Qualitative research is increasingly challenged to think creatively and critically about how accounts of lived experience might be collected, curated, and shared. Historically it could be said that qualitative research has been somewhat disregarded and undervalued. However, in recent years the potential of qualitative research in helping to better understand the lived experience of those with rare diseases has grown. As specialists in this form of research, the Haemnet team have championed these approaches through many of our studies and projects in hemophilia and bleeding disorders.
We remain curious about how this field continues to evolve and adapt. In this episode, Haemnet's Director of Community Engagement, Luke Pembroke discusses the creative approaches to qualitative research Dr Rich Gorman (Research Fellow and Social Scientist, Brighton and Sussex Medical School) as and his colleagues experimented with in recent years, employing the power of the arts to uncover unique insights in to the lived experiences of those affected by rare genetic conditions.
Show notes:
- "Writing the worlds of genomic medicine: experiences of using participatory-writing to understand life with rare conditions" - https://mh.bmj.com/content/48/2/e4
- "Stop-motion storytelling: Exploring methods for animating the worlds of rare genetic disease" - https://doi.org/10.1177/14687941221110168
- Capturing Quality of Life after Gene Therapy - https://www.haemnet.com/blog/quality-of-life-after-hemophilia-gene-therapy/
- Rich on Twitter: https://twitter.com/SustainableRich
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