August & September Update

We have now been a full team of four for two and a half months. We’ve each been moving forward with our individual work packages and have been coming together to push forward our thinking and agenda for our synergy work package.  

I’m leading the ‘Home’ work package and have been on a deep dive into the literatures on data and care, decentralised clinical trials, patient organisations, and wearables and devices in the home. I will be conducting an ethnography of a medical technology company that designs at-home wearables in the context of decentralised clinical trials for paediatric rare diseases. I’ve come across many compelling lines of questioning, particularly around care practices in data, and the many types and registers of caring relations that may be involved in the process of designing wearables for continuous data collection. Another body of scholarship with which I’ll be engaging is the anthropology and sociology of space and care. Wearables for decentralised clinical trials involve children and adolescents wearing medical devices throughout their daily lives at home to measure physiological data, and their parents updating smartphone apps with answers to prompts concerning experiential data. As processes of care are situated in and unfold through different spatial conditions, and as space can be shifted and created through forms of care, I’m curious to explore the ways in which ideas of the home and ‘the clinic’, of health and disease, and of healthcare articulate in the context of the home. I aim to start my ethnographic fieldwork over the next month or two and am really looking forward to exploring how these processes play out on the ground. 

Ethnographic fieldwork will shortly be starting for the ‘Hospital’ work package, now that all approvals are in place.  Cath will be observing the practices and processes of digitisation in ICU, as well as the design and day-to-day running of data-enabled clinical trials in this setting.  

Nicola, who’s leading the ‘Nation’ work package, has just submitted proposals to conduct her research with a Scotland-based innovation centre. Her proposed work spans three areas of interest: trans-sector collaborations and organisational culture; public participation in health data; demonstration and simulation in integrating health data services. 

Max has had his ethics application approved for a pilot study that will help him identify a specific, long term, ethnographic case study for his work on the ‘Policy’ work package. The pilot study will involve observing healthcare tech conferences and interviewing relevant stakeholders in the field.  

For our synergy work, which involves fostering conversation between our four individual work packages, theoretical developments in our fields, and the wider landscape of data-driven healthcare, this month we read and discussed Data Practices: Making Up a European People, edited by Evelyn Ruppert and Stephen Scheel (2021), Matters of Care: Speculative Ethics in More than Human Worlds by María Puig de la Bellacasa (2017), and Making Sense of Medicine: Material Culture and the Reproduction of Medical Knowledge, edited by John Nott and Anna Harris (2022). These books have helped us start thinking through the ways in which we may approach data and care both theoretically and methodologically. 

Finally, and excitingly, we have started initial plans for a symposium in November 2024, titled Dialogues on Data: Who is Data-Led Healthcare for? Bringing together academics, policy-makers, industry professionals and healthcare practitioners, the symposium will create a space for multidisciplinary discussions that consider the direction and futures of data-led healthcare as well as the present. The symposium will be structured by two dialogues, each with a member of our team in conversation with a policy-level stakeholder and clinical/data science practitioner. The symposium will wrap up with a roundtable discussion, offering the opportunity to all participants to think through our overarching question: who is data-led healthcare for?  

We are currently in the process of selecting speakers for our dialogues and plan to release a formal call for participants toward the end of September.