Medicine and the digital revolution

Technologies, data, knowledges

Matthias Pfiffner, Andri Tschudi, Jago Wyssling, Ayla Zacek, Carlo Caduff, Janina Kehr

The doctor of the future using radio and television to give a consultation to his patient aboard the ship ‘India’ in the South Seas. 1939, © Fritz KahnThe doctor of the future using radio and television to give a consultation to his patient aboard the ship ‘India’ in the South Seas. 1939, © Fritz Kahn

   source: http://www.fritz-kahn.com/gallery/the-doctor-of-the-future/

This two-day conference was held on 18–19 December 2014 at the University of Zurich. It was supported by the Swiss National Science Foundation (SNSF), the Universitätsverein Zürich (ZUNIV), and the Chair of the History of Medicine at the University of Zurich.[note 1]The conference program is available here: http://www.mhiz.uzh.ch/News/digitalrevolution.html

The last two decades have witnessed the rise of new information and communication technologies, which have profoundly shaped the world of medicine. The Medicine and the Digital Revolution conference brought an international group of anthropologists, sociologists, and historians together. Over two days, scholars discussed the encounter of clinical medicine and public health with new ways of data management and online cultures, and reflected on the role that the social sciences might play in this revolution. 

The word ‘revolution’, as Janina Kehr (University of Zurich) explained in her introduction, possesses indeed ‘such revolutionary power that it is constantly extending itself to include every last element on our globe, to assure its constant reproduction as well as to transform the situation itself’ (Koselleck 2004, 44). Revolutions, Koselleck reminds us, assure their own reproduction – they result in a proliferation of revolutions, so to speak. But revolutions also seek to change the situation itself – they make an intervention, they trigger transformation, through very concrete practices and devices. This double quality of revolutions – both reproductive and transformative – shaped the conceptualization of the conference and stimulated its vivid discussions.

Jeremy A. Greene (John Hopkins University, Baltimore) delivered the conference’s keynote lecture on telemedicine. He questioned the use of the term ‘digital revolution’ by taking a closer look at analogue communication technologies within the context of medical practice. Arguing that the telephone has been vastly under-recognized in the history of medicine, Greene explored the historical moment when the proximity between patient and doctor became relevant to medical treatment. He suggested that the invention of the telephone triggered a discussion on the ethics of telemedicine and that it profoundly reshaped the relation between doctors and patients – for example, by enabling patients to reach their doctors at every hour of the day.

Carlo Caduff (King’s College, London) opened the first panel on Data Production and Prediction by critically examining the use of new media technologies to identify epidemic outbreaks. He raised questions about the often obscure and obscured network of people and technology behind these efforts and questioned the expanding nature of early warning systems. Discussing various strategies of different technology providers, Caduff offered a thought-provoking perspective on an ‘ideology of efficiency’ at work in ‘digital epidemiology’.

In a subsequent talk, Susanne Bauer (Goethe University, Frankfurt) turned to a more established method of data collection, focussing on the Danish Civil Registration System. The data collected through the personal identification number since the 1960s proved to be a veritable ‘goldmine’ for epidemiologists. Bauer discussed these data sets as calculative devices, which can be used for educational, preventive, research, and surveillance purposes. She called for an ethnography of epidemiological risk scores, which explores how algorithms produce particular temporalities and subjectivities.

Shifting the perspective from government to patients, Madeleine Akrich (Mines ParisTech) presented her research on information and communication technologies and ‘evidence-based activism’. She argued that web-based forums of patient groups not only allow the sharing of information on disease and treatment but also create a sense of community. As communities, they become more than mere recipients of knowledge: they become active contributors by commissioning scientific papers and in some cases even identifying causes of diseases.

Julia Fleischhack (University of Zurich) discussed sociological studies on data production from the 1960s and 1970s, when computers were restricted to institutional contexts and not yet part of everyday life. How did scholars explore the interrelation of novel digital technologies, shifting data-storing practices, and the growth of personal data? Her findings suggest that questions around the privacy of data revolved around the invention of computers and the resulting abilities for data processing. 

In the second panel of the day, young researchers from the University of Zurich and the Swiss Institute of Technology, Zurich, presented their ongoing work. Ayla Zacek and Jago Wyssling provided two original perspectives on the tensions between creativity and the pragmatics of research production in a highly standardized academic system. Matthias Pfiffner analysed the self-legitimizing knowledge processes in a project of the Swiss capital Berne to fight organized begging and human trafficking. Andri Tschudi raised questions about the use of open-source principles in pharmaceutical research, using the example of the Open Source Drug Discovery project, which is an initiative of the Council of Scientific and Industrial Research, India.

The second day, focussed on digital worlds and online cultures, opened with an interactive workshop on information strategies for cancer screening from a designer’s perspective. After an introduction by Martin Feuz (Zurich University of the Arts) on the potentialities and limitations of digital media in medicine, participants were invited to evaluate the effectiveness and problems of various communication strategies in cancer screening. This practical exercise led to lively discussions about the politics of information in medicine and the relationship between science and activism.

After the lunch break, Alessandro Delfanti (University of California, Davis) continued the conversation about patient activism using the example of Salvatore Iaconesi who published the medical files and MRT images of his cancer on the website La Cura (http://opensourcecureforcancer.com/). Complementing Madeleine Alkrich’s focus on knowledge production and new forms of community, Delfanti emphasized subjectivity: while in the world of medical institutions data represents an objectification of the body, its ‘open’ re-inscription helped constitute a body politic that reconfigured the experience of cancer. In this way, digital cultures imagine and perform technologies as social and relational rather than bodily prosthesis.

While Delfanti explored the subversive potential of patient activism, the last speaker, Anna Harris (Maastricht University), discussed the creation and use of ‘autobiologies’ in a commercialized context. Comparing narratives of different people on YouTube who shared their experience with commercial genetic tests, Harris argued that YouTube enables consumers to narrate their own biology through interweaving genetic markers and family histories of disease. In these illness narratives, consumers become ‘patients-in-waiting’ through their self-assessment as genetically at risk.

The conference offered a variety of perspectives on what the term (and the desire for a) ‘digital revolution’ might mean and how it could be studied. While some participants stressed continuities and the need to put transformations associated with the rise of computers into wider historical perspective, others highlighted new forms of subjectivity and community. Despite these differences, there was a shared sense among conference participants that the effects of digital technologies are opaque. Claims about openness and transparency, which are normative in contemporary discussions about the digital revolution, thus stand in contrast to the obscurity of technologies and practices. This suggests that, rather than present grand claims about the digital revolution, attention must focus on the concrete effects of digital technologies in medicine and public health. New directions in ethnographic and historiographic research will surely be needed to better understand the ways that digital and analogue life intersect and influence each other, both in the past and the present, and to trace through which technologies, knowledges, and infrastructures this happens.

About the authors

Matthias Pfiffner, Jago Wyssling, and Ayla Zacek study anthropology at the University of Zurich. Andri Tschudi studies history of science at the Swiss Federal Institute of Technology (ETH), Zurich. Janina Kehr teaches history of medicine and medical anthropology at the University of Zurich. Carlo Caduff is a lecturer in the Department of Social Science, Health and Medicine at King’s College London.

References

Koselleck, Reinhart. 2004. Futures Past: On the Semantics of Historical Time. New York: Columbia University Press.