Project description
The first historical analysis of early patient organisations
Patient organisations first emerged in the late 19th century. While they played a central role in 20th century medical history, promoting treatments and developing healthcare resources amongst other things, these groups have been overlooked by historical research. The EU-funded ActDisease project aims to address this issue. It will provide key insights into the development of modern medicine and the role of lay involvement in science. To achieve this, the project will use a combination of traditional and digital methods to explore how the modern conception of disease took shape in these organisations in the 20th century.
Objective
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?
Fields of science (EuroSciVoc)
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
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Keywords
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Programme(s)
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
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HORIZON.1.1 - European Research Council (ERC)
MAIN PROGRAMME
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Topic(s)
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Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Funding Scheme
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
HORIZON-ERC - HORIZON ERC Grants
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Call for proposal
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
(opens in new window) ERC-2021-STG
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Net EU financial contribution. The sum of money that the participant receives, deducted by the EU contribution to its linked third party. It considers the distribution of the EU financial contribution between direct beneficiaries of the project and other types of participants, like third-party participants.
751 05 Uppsala
Sweden
The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.