Acting Out Disease (ActDisease)

How Patient Organizations Shaped Modern Medicine

Project Description

ActDisease is funded with an ERC Starting Grant and led by Ylva Söderfeldt. The project investigates the emergence and role of patient organizations as central actors in medicine in the 20th century. These organizations include allergics’ organizations that pushed for the acknowledgement of their ailments as somatic illnesses around 1900, diabetics’ associations that helped enable an advanced self-management regimen from the 1930s, and organizations for neurological diseases that coordinated rehabilitation resources in the 1950s. ActDisease studies how such organizations reshaped medical concepts and roles, and in expanding the reach of medical modes of thought. 

ActDisease will address the relationship between these processes with a large-scale, comparative historical study of patient organizations in Sweden, Germany, France and the UK, using a mixed-methods analysis combining distant and close readings of the sources. The patient organizations' print media will be digitized and analyzed through the adaptation and development of text mining methods to suit fragmented and heterogenous source materials and research questions about the development of scientific concepts and the circulation of knowledge.

Photograph showing a group of teenagers injecting insuline.
Source: Diabetes-Journal 10 (1983), p. 446.
Last modified: 2023-02-11