On the 24th October Kate made her way to the University of Seigen, following an invitation to present on the project findings. The Conference ‘Data Practices: Recorded, Provoked, Invented’ was an annual event for the Media of Co-operation. The conference theme engaged with the current challenges of studying a world saturated with data-intensive technologies. It looked to explore what constitutes a data practice and how digital media technologies are reconfiguring our understanding of these.
presented the project’s paper titled, ‘Everyday curation:
attending to data, records and record keeping in the practices of
self-monitoring‘. This unpacked the
relationship between taking a measure, making a record, and reviewing records.
The paper adopts and develops the idea of curation to consider the role of both
humans and materials in the production of records, with the aim of nuancing our
understanding of the relationship between self-monitoring and the accrual and
flow of data.
Our project symposium, ‘Health Technologies in Practice’, took place on the 19th and 20th June 2019 and was a great success, with 49 attendees from 24 institutions from across Europe. We’d like to say a big thank you to all our delegates and speakers.
Two early career researchers
reflect on their experience of attending the symposium:
Xiufeng Jia (Department of Sociological Studies, University of Sheffield): “I am a first year PhD researcher, studying how ordinary self-trackers feel about their self-tracking data in order to understand datafied agency. For me, this two-day symposium was like an academic holiday that took me away from my current busy work and brought me into an exciting and relaxing research exploration in a very friendly environment. All of projects that the researchers presented from different perspectives were creative and meaningful for academics and the society. Besides, after a walking tour of Sheffield, this symposium provided a great opportunity for me to communicate with the researchers (such as Dr Btihaj Ajana, Dr Minna Ruckenstein and Dr Rachael Kent) from beyond the University of Sheffield who are working on self-tracking studies, when we were having a lovely dinner with other participants together. The whole event actually helped me improve my literature review and interview questions, and deal with some confusions in the methods in my research project. It also really encouraged me to be more enthusiastic to research, after experiencing how those researchers investigated new and interesting projects through their talks.”
Lauren White (Department of Sociological Studies, University of Sheffield): “As a third year PhD researcher exploring the daily practices of people living with Irritable Bowel Syndrome (IBS), the conference reminded me of important features of managing health present in my own research, alongside important methodological considerations. In particular, I was drawn to the relational practices of monitoring health, and how managing health or symptoms of broader illness can be situated in relational networks both in public and private lives. Moreover, I recognised the careful tightrope of negotiating surveillance and care, as both an individual and collective practice. Methodologically, I found familiarity in the materiality, and again attached my own research experiences of using paper diaries and object elicitations to those of the presenters. Reaching the end of the conference, I left with new connections, alongside insights and striking lines into the possibilities of monitoring health, as an affective, material and important lived experience in a fast and changing social landscape.“
On March 21st and 22nd Catherine presented an early draft of the paper ‘Relating with data: stories of self-monitoring with care’ to the Anthropology of Technology network in Denmark, at their event Big Data and the Power of Narrative. As well as participating with Dorthe Brogard Kristensen and other researchers working on mundane health technologies in a panel on privacy and surveillance, enjoyed great keynotes from Joe Dumit, Minna Ruckenstein and Evelyn Ruppert on how social scientists relate to data scientists and their practices, prompting lots of methodological reflection that we will pick up again at our event in June.
With 6 months left on the Tracking Ourselves project, we are progressing well with the analysis of the data we have collected, and we are getting to the final stages of data collection. We have now completed our interviews with around 80 people who self-monitor blood pressure and/or BMI, and we have also now completed five focus groups with primary care doctors and nurses, to explore their views and experiences of patient self-monitoring of blood pressure and BMI.
We are currently drafting a number of papers from the project, relating to digital health platforms, to everyday data practices and to care in relation to self-monitoring. Plans for our project symposium, ‘Health technologies in practice: between the home and the clinic’ are also coming along well. This will take place in Sheffield in June – full details will be announced on the symposium page soon!
On the 3rd December 2018 Jacob attended an event entitled ‘Health and Care Data: Improving Lives Through Research’, which was organised by NHS Digital and took place in Leeds. The event was an opportunity for NHS Digital to promote their current projects and network with employees from across other non-clinical divisions of the NHS which manage data, along with clinicians and researchers.
Presentations at the event were focussed on how potential uses of data in the NHS could be maximised for patient and public benefit, and a small part of this related to opportunities for research. Speakers highlighted the imminent release of the NHS Long Term plan, due out between the 12th and 21st December 2018. The long term plan will include a 10 year vision for research and innovation, across three life periods (denoted by the terms: ‘early life’; ‘staying healthy’; and ‘ageing well’), four key priorities (cancer; cardiovascular and respiratory; mental health; learning disabilities and autism), and across five enablers (workforce, primary care, digital innovation and technology, research and innovation, engagement).
The event gave a general sense of optimism for the future of data as a tool for improving care for patients, including several allusions to a future where patients are enabled to submit their own data (including blood pressure readings) to their healthcare providers through online portals. Indeed, it was mentioned that with certain electronic patient management systems, this is already possible, though the facility is underused. Our next phase of research in the Tracking Ourselves project will explore clinicians’ views of the self-monitoring of blood pressure and BMI, and our results may help to inform this vision of the future.
Meeting healthcare academics at Brighton & Sussex Medical School
Last week, on the 29th November 2018, Catherine, Flis and Jacob ran a seminar for academic staff at the Brighton & Sussex Medical School. The aim of the session was to explore a series of ‘vignettes’, or short excerpts, from our interview data, with academics who have experience of providing healthcare. We wanted to know how well these vignettes would work in a focus group setting with GPs and practice nurses, as we intend to run four focus groups of this sort early next year.
Nine people attended the seminar in Brighton, and all of them were very happy to help us work through the vignettes. We were able to learn a lot about what extra information we should provide alongside these excerpts to help our participants understand them, and we were happy to hear the attendees’ views of the stories coming from the project so far.
We would like to thank everyone who took part, and we would encourage you all to stay in touch with the Tracking Ourselves team!
They talked about ‘engaging material methods to explore everyday health practices’, reflecting on their experiences of using objects like monitoring devices, apps, and records as prompts in interviews. They also gave some initial reflections on the use of long-duration photo elicitation, including the practicalities of setting up and managing this, and some of the new insights gained as a result of using it.
After two years’ work on the project, it is with regret that we say goodbye to Dr Ros Williams, as she takes up a new position at the University of Sheffield. Ros is now a Lecturer in Digital Media and Society at the Department of Sociological Studies. She is currently working on papers attached to the Tracking Ourselves project alongside teaching digital research methods. In 2019, Ros begins a Wellcome Trust research fellowship looking at minority ethnicity stem cell donation in the UK, undertaking ethnographic and digital methods-based research into how racialised communities are engaged in acts of tissue donation.
We thank Ros for all her hard work, and wish her many congratulations and all the best for her exciting new work!
We now welcome Dr Jacob Andrews as Research Associate on the project. Jacob has research experience in healthcare services research, with a particular interest in exploring the use of technology to detect and prevent ill health.