Periodic Reporting for period 1 - ActDisease (Acting Out Disease. How Patient Organizations Shaped Modern Medicine)
Periodo di rendicontazione: 2023-01-01 al 2025-06-30
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. The main hypothesis is 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. We investigate how patients in these organisations "acted out" medical knowledge through activities, ideas, campaigning etc. We also investigate how they assumed notions of selfhood that overlapped and interacted with those of medical scientists.
The project is interdisciplinary, setting up a team of researchers from history and the digital humanities to analyse the publications and archives of patient organizations from four European nations – Sweden, Germany, United Kingdom and France. This is a vast source material that has previously not been considered by historians, and has many properties that makes it challenging for computer-based analysis. 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? In addition, in solving the methodological problems with working with fragmented, multilingual, and highly diverse source materials, the project also contributes to the field of digital humanities.
The project is interdisciplinary, setting up a team of researchers from history and the digital humanities to analyse the publications and archives of patient organizations from four European nations – Sweden, Germany, United Kingdom and France. This is a vast source material that has previously not been considered by historians, and has many properties that makes it challenging for computer-based analysis. 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? In addition, in solving the methodological problems with working with fragmented, multilingual, and highly diverse source materials, the project also contributes to the field of digital humanities.
The PI has conducted empirical studies mainly of Swedish patient organisations to characterize the role and trajectories of patient organizations in the context of healthcare policy and infrastructure and medical research and practice, in order to produce an outline of their structural development, typology and function.
Selection of relevant source segments and analysis of expressions of medical ontologies and modes of thought and conduct in patient organizations’ periodicals and archival documents, mainly done on medical classification internationally and diabetes illness concepts in the Swedish context.
Leading the research engineers (senior research assistants) and the junior research assistant in building a solid technical structure for the project, including developing a database and frontend for the source corpus. This entailed pre-processing already scanned material (applying OCR, converting into txt and xml formats, correcting for errors and ‘cleaning’ the data, lemmatization, POS-tagging etc) and building a database structure, but was significantly delayed for the inclusion of the British material due to the cyber attack on the British library. By the end of 24 months, all material had been collected but work still remained on the final curation of the database. The frontend is up and running.
PI, SRA, JRA and the postdocs have collaborated in running initial computer-based analyses on the material using and adapting available digital tools. Besides established word count- and collocation-based text mining tools and methodologies, we have also conducted significant methodological development of NLP techniques for visualization and segmentation of the data and, using these new tools, performed analyses of the source material that have yielded valuable empirical results. This goes further than we had originally anticipated for the first 24 months.
Furthermore, the two historian postdocs have performed qualitative, empirical studies, primarily on the British patient organisations so far, outlining trends and trajectories and identifying important contextual events and developments in the respective countries (France and UK).
The project uses a high degree of novel methodologies, interdisciplinary work, and knowledge transfer. During our first two years, we have adapted existing NLP visualisation tools to fit historical analysis, including the WordRain visualisation and the Topic Timeline visualisation. Furthermore, the postdoc in digital humanities, Vera Danilova, has developed a framework for genre analysis borrowing from NLP but adapted for historical print media. This development process is intended to help segment historical source materials in a way that makes them more accessible for text mining, a major challenge which excludes many interesting sources from the methods already available in the digital humanities. With the genre annotation technique, different types of content can be separated from each other automatically and analysed, hence reducing noise and producing more fruitful results.
During its first 24 months, the project has generated three scientific publications, and a further eight publications are in various stages of the review process. The papers published so far are focused on the technical aspects of building the database and methods for performing computer-based analyses on the sources. Furthermore, the project team members have presented their work at numerous conferences internationally. In addition, the project team has worked on developing a cross-cutting theory for the use of big datasets in the humanities and biomedicine. We have presented this theory at two conferences and are planning for publication as a research paper.
Selection of relevant source segments and analysis of expressions of medical ontologies and modes of thought and conduct in patient organizations’ periodicals and archival documents, mainly done on medical classification internationally and diabetes illness concepts in the Swedish context.
Leading the research engineers (senior research assistants) and the junior research assistant in building a solid technical structure for the project, including developing a database and frontend for the source corpus. This entailed pre-processing already scanned material (applying OCR, converting into txt and xml formats, correcting for errors and ‘cleaning’ the data, lemmatization, POS-tagging etc) and building a database structure, but was significantly delayed for the inclusion of the British material due to the cyber attack on the British library. By the end of 24 months, all material had been collected but work still remained on the final curation of the database. The frontend is up and running.
PI, SRA, JRA and the postdocs have collaborated in running initial computer-based analyses on the material using and adapting available digital tools. Besides established word count- and collocation-based text mining tools and methodologies, we have also conducted significant methodological development of NLP techniques for visualization and segmentation of the data and, using these new tools, performed analyses of the source material that have yielded valuable empirical results. This goes further than we had originally anticipated for the first 24 months.
Furthermore, the two historian postdocs have performed qualitative, empirical studies, primarily on the British patient organisations so far, outlining trends and trajectories and identifying important contextual events and developments in the respective countries (France and UK).
The project uses a high degree of novel methodologies, interdisciplinary work, and knowledge transfer. During our first two years, we have adapted existing NLP visualisation tools to fit historical analysis, including the WordRain visualisation and the Topic Timeline visualisation. Furthermore, the postdoc in digital humanities, Vera Danilova, has developed a framework for genre analysis borrowing from NLP but adapted for historical print media. This development process is intended to help segment historical source materials in a way that makes them more accessible for text mining, a major challenge which excludes many interesting sources from the methods already available in the digital humanities. With the genre annotation technique, different types of content can be separated from each other automatically and analysed, hence reducing noise and producing more fruitful results.
During its first 24 months, the project has generated three scientific publications, and a further eight publications are in various stages of the review process. The papers published so far are focused on the technical aspects of building the database and methods for performing computer-based analyses on the sources. Furthermore, the project team members have presented their work at numerous conferences internationally. In addition, the project team has worked on developing a cross-cutting theory for the use of big datasets in the humanities and biomedicine. We have presented this theory at two conferences and are planning for publication as a research paper.
Of our achievements so far, we consider the theoretical development for big data research the most clearly beyond the state of the art. We are anticipating publication of the paper which we believe will go counter to current, state of the art critiques as well as defences of the digital humanities and has the potential of informing theoretical development in this developing field.