Workshop report: Data and Disease in Historical Perspective

Cover of the Programme of the Data and Disease Workshop


The Epidemy Lab organised an online workshop led by Dr John Nott and Dr Lukas Engelmann on Data and Disease in Historical Perspective on the 7th and 8th of June 2023. This is the third workshop of ‘The Epidemiological Revolution’ project which explores a new history of epidemiological reasoning in the 20th century. In this workshop, over two days the participants discussed the relationship between disease and data, and how epidemiological data has shaped and informed the production of epidemiological knowledge.

The workshop included 23 presentations and around 40 participants. The presentations covered the period from the 19th century until now and focused on a wide range of localities including Uganda, Malawi, Brazil, the USA, the UK, India, and China. Each day was divided into three broad themes: Methodology, Materiality, and Governmentality. However, these were broad categorisations and many presentations touched on all three themes.

Two broad methodological dimensions were present throughout. First, some presentations had a focus on how epidemiological data was collected, used, formatted, and analysed. For example, the role of statistics and what can be counted as reliable and trustworthy data was an important aspect of Holmes’ presentation on smallpox vaccination debates in the British Empire and Uzcanga and Teira’s work on the controversy surrounding Jaime Ferrán’s cholera vaccine. Second, some presentations reflected on their own use and analysis of epidemiological data and archives. This was clear in Murkens and Riswick’s presentation on their work of creating new databases using individual-level data on death and disease in the 19th-century Netherlands. Others reflected on how to utilise historical data regarding marginalised and oppressed groups without falling back to the racist, ableist, and unjust framings through which the data was originally collected and used. Wernimont, Bobak, Hua and Qi thus reflected on how to ethically use their data on populations affected by American eugenics laws without reproducing the pathologisation of the patients affected by these laws. McGuire, in her talk on how disabilities were categorised as either innate or acquired, offered thoughtful reflections on how reading data against the grain let her reframe and recontextualise them and show the inherent but not always visible diversity of disablement.

Materiality was another important focus in understanding the conditions that shape data collection and analysis. Especially the role of ‘paper technologies’ in making and shaping medical and epidemiological knowledge was at the forefront of many presentations. Healy discussed the role of symptom scales in the shaping of psychiatric epidemiology, while Cochrane, Fraser and Reubi focused on the role of Ted Williams’ handwritten data practices to discuss the production of epidemiological data in Uganda in its social, political and colonial context. Another approach was the use of material culture approaches to study the emergence and evolution of epidemiological research and data infrastructures. A key example of this was Biruk’s presentation on how everyday commodities in Nyasaland became a key part of a colonial health data infrastructure.

The governance of epidemiological data (and its vital infrastructures) was a prominent concern. Simoncelli focused on how the aftermath of the Asian Flu Pandemic in 1957 shaped the collection and analysis of worldwide influenza data and how the flu should be classified, while Hüntelmann looked at the institutional and organisational history of Germany’s cancer registry. On the other hand, the governance by epidemiological data (infrastructures) was discussed too. presented the role of surveillance tools of congenital malformations in Latin America in the shaping of clinical perspectives and the governance of the Zika virus in Brazil. And Simon described how the introduction of Electronic Death Registration Systems in the USA led to its workforce having different interactions with mortality data. Another aspect was the role of epidemiological data in policymaking. This was particularly salient in Kulikoff’s presentation on the creation of Covid-19 data dashboards in the USA and the politics involved in their construction and use by policymakers.

A prevalent theme was a focus on epidemiological reasoning itself and how it developed and spread to other fields. Koch presented a wide history of the mapping and statistical tools which have been central to the production and dissemination of epidemiological data from the late 17th century to today. More specific aspects of modern epidemiological reasoning were discussed by Engelmann and Cummiskey and McKay. Engelmann discussed the role of tabulation in the transition of epidemiology from narrative practice to a more formal and quantitative field, while Cummiskey and McKay presented a genealogy of the ‘network’ to understand how it became central to contemporary epidemiological knowledge production. Parry and Robertson focused, instead, on how epidemiological reasoning spread to other fields. The former discussed how it has been applied to accident and injury control and the latter focused on how epidemiologists were employed by the WHO in redefining and standardising psychiatric categories.

A crosscutting question throughout the workshop was the place of colonialism and race. Many of the presentations focused on epidemiology’s role in colonial surveillance and administration and the construction of race. Amongst others, Wan discussed the role of anthropometry in the construction of a ‘Chinese’ race, while  , Nott, and Reubi, Fraser, and Cochrane discussed how epidemiological projects were part of wider colonial ambitions in India and Africa. Eddy on the other hand discussed how the black doctor James Horton used his medical knowledge and epidemiological data from West Africa to counter racial models and understandings of disease, hereby showing a countervailing use of epidemiology.

A striking theme, brought forward primarily in the discussions following the presentations, was that of the pathologisation of individuals and populations. It was noted that many presentations dealt with how a variety of practices and technologies declare individuals or populations sick or healthy, and that it is important to focus on who is declared sick or well. Nott’s talk on the use of Demographic Health Surveys in Africa is an example of this. But it was also a theme in the presentations of, amongst others, Biruk, Saikia, and Kulikoff. The discussion also focused on if and how population classifications of the normal and the pathological may map to individual clinical understandings of health. It was suggested that a different vocabulary may have been necessary to scale from the individual to populations, which could help explain why terms like networks have become popular in epidemiology.

Overall, this insightful workshop offered a variety of perspectives and cases regarding the historical collection, analysis and use of epidemiological data. One main strength of these histories is that they can showcase the radical contingency of data practices in and for epidemiological reasoning. This conversation and discussion will be sharpened and continued with a second in-person workshop in December 2023, which will culminate in the publication of a special issue on data and disease in 2024.

You can find the workshop programme here.