The story of illness

I’m a researcher in health informatics – but growing up, what I always dreamed of was being an author, a storyteller. As a researcher, I of course get to write. And write, and write. But the storytelling is seldom in focus. Rather – we tend to focus on academic writing, structured data, and information models, and reuse of medical data. Perhaps this is why I enjoy social media and blogging as more of a creative outlet.

I guess my love for storytelling is also what has drawn me towards working with user experience in healthcare, and patient experience in particular. I take pride and pleasure in trying to understand and communicate the stories that people entrust me with, whether I’m working with lung cancer patients, stroke survivors or assistant nurses in homecare of elderly. What can we learn from these that will help us better design health informatics soluations?

With my more recent experience of travelling with my father through his cancer journey, the meaning of storytelling has grown. The importance of being able to tell your story. Of having someone hearing it. The therapeutic effects storytelling has, and the dire consequences of stories unheard. This fall, I will help organize a 1-day conference on Narrative Medicine in Stockholm, and leading up to this event I will have plenty of opportunity to explore what storytelling means to patients, caregivers, healthcare professionals – and to designers of health informatics solutions.

I would like to begin by sharing a TedX talk entitled “Honoring the stories of illness” by Rita Charon, the executive director of the Program in Narrative Medicine at the Columbia University Medical Centre.

[post 35 in the #blogg100 challenge]

This entry was posted in Consumer Health Informatics, Narrative medicine, Patient experience, Social media and tagged , , , , . Bookmark the permalink.

2 Responses to The story of illness

  1. Anna Friberg says:

    Hi! When will the one-day conference on narrativa medicine take place?

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