Citizen Science and narrative medicine

Citizen Research or Citizen Science (CS) is an expanding research field where citizens are involved in science across disciplinary boundaries and platforms. Narrative medicine (literature) is relevant as Citizen Science, as one of the things narrative medicine aims at is to change citizens’ perception of health and disease.

Nevertheless, a large experiment with a broad target audience has never been carried out within the field of narrative medicine. Therefore, it was interesting to attempt a wide Citizen Science experiment in order to investigate what happens if you involve a large group of citizens in a research experiment about the reading, interpretation, writing and discussion of literary texts. The experiment was arranged as a writer’s workshop where citizens both read and wrote literary texts and reflected on the process. This type of engaging research within literature and health has been the first of its kind.  

The purpose of the project was to have citizens read and interpret literature, in the end making them reflect on the literature. The experiment was conducted as a reading and writing workshop. For the experiment, several texts were chosen, read and discussed with one or more of the groups. The group(s) contributed to the literature suggestions and texts in the workshop. The citizens were encouraged to suggest literature that made sense for them in concern to health/disease. Parallel to this a couple of literary bloggers provided a platform at TV2/Fyn, where the participants could discuss the literature in a blog.  

Literature on the Go: A literary workshop about health and disease

Citizen Science in the service of the people at Funen 

At the medical education at SDU, students are instructed in narrative medicine which enhances the awareness about language and increases their empathy and reflection. In JyllandsPosten, Chief Medical Officer at OUH, Kim Brixen says: ”It is not a collection of symptoms that goes to the doctor, it is an entire human being”. This is why medical students must learn how to see and understand the human being as a whole. 

Narrative medicine is used as a supplement to the traditional treatment of various diseases. This is conducted through creative writing, where the participants use the process of creative writing to develop a different understanding of their situation. These workshops are part of a research project that seeks to examine where and how narrative medicine can contribute to the treatment of different patient groups.  

In the same way, literary workshops for regular citizens are important contributions to the research within narrative medicine. A Citizen Science project like that supports the research that is conducted among the different groups of patients. 

In October 2018 SDU and TV2/Fyn launched a new Citizen Science project translated “Literature on the Go” where citizens were invited to take part in a literary workshop. Here they could meet scientists, authors and other citizens interested in literature and share their experiences with literature. Read more about the research project here (in Danish)

'Literature on the Go' was composed of several literary workshops where citizens, as well as healthcare professionals, shared their experiences and thoughts about literature. These literary workshops were created to bring about a dialogue among the participants on themes such as “the Hospital World”, “Life’s beginning and end” and the literature’s importance and possibility in relation to health and disease. 

See Tv2/Fyn's broadcasting on 'Litteraturen rykker ud' here (In Danish)