Workshop: Reconfiguring the citizen-patient through health and care data

Call for Papers

This two-day workshop will bring together researchers across Science and Technology Studies, Sociology of Health and Care, Medical Anthropology, Critical Data Studies, and related fields to explore how citizenship and patienthood are being reconfigured together in an era of intense datafication (Ruckenstein & Schüll, 2017) across health and care.  

Within digital and data-driven healthcare, there are high expectations that increased computational power, universal connectivity, and – crucially – the availability of extensive data about patients will drive health and care towards a model that is smart, connected, integrated, and dynamic, and therefore more efficient, productive, and personalized. Future visions and emerging articulations of data-driven health and care come with particular expectations of patients in return for these promises, demanding connectedness, data generation, and data-sharing as well as civic contributions in the form of participation in consultations, research, and implementation work. How people become patients, how they live as patients, and what it means to be a patient is changing. At the same time, health and care data are imbricated in myriad technoscientific practices shaping the conditions and possibilities of citizenship, from biometric surveillance in criminal justice and border control to opaque assessments of eligibility and entitlement to state assistance, education, employment, insurance, or credit. Through such data practices, old injustices are retrenched and new ones emerge – met by new patterns of refusal and resistance. 

In an era of ever-expanding notions about which data are relevant to health and care and ever-increasing uses of health and care data across other domains, thinking about citizenship and patienthood calls for us to revisit our conceptual toolkit. Almost all data can be health and care data, and health and care data can be used almost anywhere: are ‘patient 2.0’ (Danholt et al., 2013), the ‘digitally-engaged patient’(Lupton, 2013), and the ‘patient-consumer’(Mold, 2015) (Schlich & Elder, 2025) still good to think with across systems that are becoming so thoroughly data-saturated? Can the multiplying social relations they engage in, and are engaged by, be adequately characterised in terms of ‘biosociality’ (Rabinow, 1996), ‘datasociality’ (Navne & Svendsen, 2022), ‘biological citizenship’ (Rose & Novas, 2007), ‘bio-digital citizenship’ (Petersen et al., 2019), or ‘(digital) health citizenship’ (Petrakaki et al., 2021) (Jauho & Helén, 2023)? 

This workshop invites empirically-grounded contributions that extend and trouble prevailing concepts by attending to how ‘actual, potential, troublesome, and impossible citizens’ (Rose & Novas, 2007, p. 440) and actual, potential, troublesome, and impossible patients emerge together through contemporary health and care data practices. 

Submissions should look within or between specific health and care systems, assemblages, and practices to address questions such as: 

• How do data practices shape forms of knowing and being and how does this bear on forms of citizenship and patienthood? 
• How do notions of independence, responsibility, personal benefit, and public good shape expectations for and requirements of patients and citizens with regard to their health and care data? 
• How do practices like data performativity (Blouin, 2020; Tichenor, 2017) and uneven datafication (Akbari, 2026) (Arora, 2026) in health and care maintain and create injustices in relation to citizenship and civic life? 
• How are the boundaries of citizenship and patienthood negotiated through the (mis)use of data within and beyond health and care systems? 
• How do different models of patient and public involvement, engagement, consultation, and co-design in relation to data enact patienthood and citizenship? 
• What modes of non-participation, refusal, resistance, solidarity, and activism are available to different individuals and communities? 

The workshop will take place at the University of Edinburgh on Thursday 3rd and Friday 4th December 2026, when participants will present and discuss their work with a view to developing papers for a potential special journal issue or themed collection.   

To apply to take part, please submit your details and an abstract of no more than 300 words via this web form by Monday 17th August 2026.

We plan to meet in-person, but please get in touch directly if this would prohibit you from participating, or if there is anything else you’d like us to know about accommodating you should your abstract be accepted. (Nothing you share will affect the decision about your abstract; but it will allow us to start planning the workshop around everyone’s needs as early as possible). A small amount of funding is available to support attendees without access to institutional funding.

Submissions are welcome from researchers at all career stages (including postgraduate students), with or without institutional affiliation.

Please contact nicola.sugden[at]ed.ac.uk with any questions.

References

Akbari, A. (2026). Uneven datafication. Dialogues on Digital Society. https://doi.org/10.1177/29768640261439961  

Arora, P. (2026). Extending uneven datafication: Complicity, aspiration, and the privilege of pessimism. Dialogues on Digital Society. https://doi.org/10.1177/29768640261455189  

Blouin, G. G. (2020). Data Performativity and Health: The Politics of Health Data Practices in Europe. Science, technology, & human values, 45(2), 317-341. https://doi.org/10.1177/0162243919882083  

Danholt, P., Piras, E. M., Storni, C., & Zanutto, A. (2013). Editorial: The shaping of patient 2.0: Exploring agencies, technologies and discourses in new healthcare practices. Science & technology studies (Tampere, Finland), 26(2), 3-13. https://doi.org/https://doi.org/10.23987/sts.55295  

Jauho, M., & Helén, I. (2023). Citizenship by vitality: rethinking the concept of health citizenship. Distinktion (Aarhus), ahead-of-print(ahead-of-print), 1-21. https://doi.org/10.1080/1600910X.2022.2057561  

Lupton, D. (2013). The digitally engaged patient: Self-monitoring and self-care in the digital health era. Social theory & health, 11(3), 256-270. https://doi.org/10.1057/sth.2013.10  

Mold, A. (2015). Making the patient-consumer : patient organisations and health consumerism in Britain. Manchester University Press.  

Navne, L. E., & Svendsen, M. N. (2022). De novo kin: sharing data, shielding persons, and forging relatedness in precision medicine. The Journal of the Royal Anthropological Institute, 28(4), 1159-1176. https://doi.org/10.1111/1467-9655.13817  

Petersen, A., Schermuly, A. C., & Anderson, A. (2019). The shifting politics of patient activism: From bio-sociality to bio-digital citizenship. Health, 23(4), 478-494. https://doi.org/10.1177/1363459318815944  

Petrakaki, D., Hilberg, E., & Waring, J. (2021). The Cultivation of Digital Health Citizenship. Social Science & Medicine, 270, 113675. https://doi.org/10.1016/j.socscimed.2021.113675  

Rabinow, P. (1996). Artificiality and Enlightment: From Sociobiology to Biosociality. In Essays on the Anthropology of Reason. Princeton University Press.  

Rose, N., & Novas, C. (2007). Biological Citizenship. In A. O. Ong & S. J. Collier (Eds.), Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems (pp. 439-463). Blackwell Publishing Ltd. https://doi.org/10.1002/9780470696569.ch23  

Ruckenstein, M., & Schüll, N. D. (2017). The Datafication of Health. Annual review of anthropology, 46(1), 261-278. https://doi.org/10.1146/annurev-anthro-102116-041244  

Schlich, T., & Elder, R. (2025). Technology, health, and the patient consumer in the twentieth century. Manchester University Press. https://doi.org/10.7765/9781526171153  

Tichenor, M. (2017). Data Performativity, Performing Health Work: Malaria and Labor in Senegal. Medical anthropology, 36(5), 436-448. https://doi.org/10.1080/01459740.2017.1316722