The Mobilization of Patients in 20th Century Medicine

Project Description

In this project, I study the emergence and development of patient organizations in Germany in the 20th century. The core interest is in what enabled patients to envision themselves as social groups with shared interests, and how organized patients have interacted with professional medicine from around 1900 until today.

The study objects are the self-governed organizations that people with particular illnesses in common began forming in the late 19th century. During the 20th century, the phenomenon grew into an influential social movement, where patients engaged in self-help, sociability, lobbying, and knowledge generation, spreading awareness and pushing their agendas among peers, physicians, decision makers, and the public.

The project consists of three interrelated case studies of individual German patient organizations in specific time periods: The Hay Fever Federation and contested illness 1897-1928, the Diabetes Federation and self-regulation, 1962-1972, and the Hemophilia Society and conflicts of interest, 1982-1994. Together, these cover central aspects of the patient organization movement, and most of the 20th century.

Viewing the history of organized patients, it becomes clear that they assumed a function beyond the clear division between physician-expert and patient-object, taking an active part in rearing and assigning expertise relating to their specific conditions. Studying patient organizations therefore has the potential of revising our image of how the medical landscape has been structured, and the relationship between those who produce knowledge and the ones they produce knowledge about.

Postcard from the German island of Heligoland, where the first European patient organization, the Hay Fever Federation, was based (Wikimedia Commons).

About the Project

Project Duration

2020–2022

Funding

The project is funded by the Swedish Research Council (Vetenskapsrådet).

Researcher