The researchers’ role in re-constructing patient narratives to present them as patient experiences

According to Arthur W. Frank, illness is a call for stories. It is widely accepted that a narrative approach in medicine improves health care outcomes and there is some evidence that listening to illness stories of others has a positive effect also on fellow patients. However, when researchers collect patient narratives and prepare them to be used by, and to help, patients or other sufferers, they may change the nature of the narratives. This chapter shows how illness narratives are arranged on DIPEx websites as short statements and summarized under certain topics—with the aim to represent the whole range of patient experiences. It then discusses why people may listen to patient experiences, for example, to make informed choices on the basis of evidence-based experiential information, and/or to use experiences of others as ‘companion stories’ to complete their own illness narrative and to give it a ‘gestalt’.