Descripción del proyecto
El primer análisis histórico de las primeras asociaciones de pacientes
Las asociaciones de pacientes aparecieron por primera vez a finales del siglo XIX. Aunque tuvieron un papel central en la historia de la medicina en el siglo XX, pues promovieron tratamientos y desarrollaron recursos de atención médica entre otras cuestiones, la investigación histórica ha pasado por alto a estos grupos. El proyecto ActDisease, financiado con fondos europeos, pretende abordar esta cuestión. Aportará información clave sobre el desarrollo de la medicina moderna y el papel de la implicación de los legos en la materia en la ciencia. De este modo, el equipo del proyecto usará una combinación de métodos tradicionales y digitales para estudiar cómo se formó la idea moderna de enfermedad en estas organizaciones en el siglo XX.
Objetivo
This project will provide crucial insights into the development of modern medicine and the role of lay involvement in science through analysis of so far largely neglected, but central actors in 20th century medical history: patient organizations. These groups first emerged in the late 19th century, and worked towards increased attention to particular illnesses, shared information on disease management, promoted treatments, and developed healthcare resources.
This project is the first historical analysis of these early patient organizations' role in shaping ideas about illness and medical practices, and the first systematic account of how disease became an object of civic organization. It will argue that modern medicine was to a significant degree shaped by organized patients, who helped establish disease concepts and associated practices - and that this deep involvement of patients in medicine facilitated an extended reach of medical power which resonates in contemporary society. It will also investigate how patients, in acting out medical knowledge, assumed notions of selfhood that overlapped and interacted with those of medical scientists.
I will lead a team of researchers to analyse the publications and archives of patient organizations from four European nations - Sweden, Germany, United Kingdom and France - a vast source material previously not considered by historians. Studying these rich sources will answer some of the core questions related to medicine in the 20th century, and in particular the role of patients: How was the idea of diseases as distinct entities established, how has it changed the medical landscape and the way we regard ourselves in relation to health and illness? What was the role of patients themselves in this transformative process, how has their involvement in knowledge generation and decision-making developed over the past century, and to what extent has it lived up to the hopes of being a democratizing force in medicine?
Ámbito científico
Programa(s)
- HORIZON.1.1 - European Research Council (ERC) Main Programme
Régimen de financiación
HORIZON-AG - HORIZON Action Grant Budget-BasedInstitución de acogida
751 05 Uppsala
Suecia