The paper came from the project, drawing on qualitative research with individuals and couples engaged in monitoring Body Mass Index, weight or blood pressure in the UK with devices acquired independently of the clinic. Kate and Catherine reflected on the factors that disrupt or interrupt the anticipated flow of data from these practices towards the clinic or commercial digital health platforms, and shift the meaning of self-monitoring as a practice. In analysing narratives of care-full (and some care-less) negotiations of monitoring, the paper sought to complicate accounts of the dataification of health in everyday life and of the individual focus of self-monitoring, showing these technologies to be embedded in domestic life and relations with close others.
On the 5th July 2019, Jacob presented at the SAPC Annual Scientific Meeting at the University of Exeter. His presentation was entitled ‘What are primary care professionals’ views on patients’ use of self-monitoring technologies?’, and discussed the results of a focus group study with 21 primary care professionals.
The presentation explained how we designed vignettes based on data from our interviews with people who use blood pressure monitors and/or BMI scales at home. It also outlined some of the findings from the study, including how practitioners have advised their patients on what type of device to purchase and how they educate patients about how to use their monitors and how their data is used.
We are currently developing a more detailed look at the issues explored in the focus groups for a paper.
On the 19th and 20th of June 2019, the ‘Tracking Ourselves’ team hosted a two-day symposium on ‘Health Technologies in Practice: Between the home and the clinic’. The symposium marked the culmination of the Leverhulme Trust Funded Research Project on “Knowledge, Care and the Practices of Self-Monitoring”. The event brought together an interdisciplinary and international group of speakers, with interests in STS, medical sociology, anthropology, disability studies, media studies and cultural studies. Speakers were all interested in health technologies that bridge the home and the clinic, but focused on different empirical sites and employed different methods. All the papers shared a broad interest in everyday health practices and how these relate to responsibilities for health and care, as well as the people, technologies, spaces and relationships involved, including the role of health professionals and commercial actors.
On the first day, after a brief introduction to the project, Dr Kate Weiner (University of
Sheffield) presented the first paper from the ‘Tracking Ourselves’ project,
looking at everyday data practices of self-monitoring in relation to body mass
index (BMI) and blood pressure.
Considering the relationships between taking a measure, recording,
storing and reviewing data, Kate developed the idea of curation in relation to
self-monitoring records, and discussed the human work and different materials
involved in this practice.
The next presentation was by Dr Dorthe Brogård Kristensen (University of Southern Denmark) on “Optimization and the Imaginary of Metrics”. Based on an ethnography of self-tracking in a gym, the paper aimed to explore how users respond to and manage the metrics and algorithms that shape social life. Resonating with the previous talk, Dorthe drew attention to the materials involved, considering the ‘affordances’ of both digital and analogue technologies and the way people use these on their own terms.
Professor Janice McLaughlin (Newcastle University) then presented on the self-surveillance practices of young disabled people and their use of home as a site of embodied self-monitoring. Janice explored how young disabled people experience both medical advice to modify their bodies and their felt individual expectations about the capacities of their bodies.
final presentations of the first day, Dr Ros Williams (University of Sheffield)
and Dr Jacob Andrews (University of Sheffield) provided some methodological
reflections on the “Tracking Ourselves?” project. Ros presented on the
development and experiences of using long duration auto-photography and photo
elicitation interviews to explore everyday self-monitoring practices. Jake
discussed the process of creating vignettes from interviews on self-monitoring,
and the use of these as prompts for focus groups to explore clinicians’ views
and professional experiences. Ros and Jake both reflected on the nuances and
possibilities of these methods.
On the second day, Dr Btihaj Ajana (King’s College London) presented “Sharing and its discontents in the Quantified Self (QS) culture” discussing the differences between the sharing economy and commodity exchanges. By linking data philanthropy with data commercialisation, her presentation raised questions in relation to individual privacy and public interest. Dr Catherine Will (University of Sussex) and Professor Flis Henwood (University of Brighton) continued to address the communal aspects of self-monitoring with their paper from the ‘Tracking Ourselves’ project which explored the role of family and friends in the practices of self-monitoring. They argued that monitoring is a care practice, and that people tread carefully between care and surveillance. The talk illustrated the way that the work of maintaining or sustaining health is negotiated within families and monitoring has affective or emotional components in everyday life.
The last two papers of the symposium focused on the internet as a health technology, but in different ways. Dr Fiona Stevenson (University College, London) presented on raising, discussing and using the internet to seek health related information in General Practitioner (GP) consultations. Based on conversation analysis of video-recorded consultations, Fiona demonstrated that, contrary to expectations, the degree to which patients mention the internet is, in fact, relatively limited and that the way that patients invoke the internet in medical consultations is imbued with complexity.
Dr Minna Ruckenstein (University of Helsinki) presented her ongoing project
about “Tracing Medicinal Agencies: Antidepressants and Life-Effects”, talking
about everyday drug experiences and exploring the human-drug relationship. Her
project analysed health related posts from large digital open data sets, using
the computational tool Medicine Radar. This work contributes to methodological
innovation in social research and introduces the idea that side effects of
antidepressants are better understood as life effects.
Closing remarks were given by Professor Alex Faulkner (University of Sussex) and Professor Sarah Nettleton (University of York), who reflected on key themes and take away messages from the two days. They reflected on the broader politics of these technologies and their uses, and on the empirical insights gained from the different methods employed. Both commented on the ‘retro’ nature of monitoring in everyday life, in spite of innovations in technology. Sarah commented that by ‘lifting the lid’ on these practices, the presentations had been able to consider the ‘messy granularity’ of agency across cases. Finally, many of the presentations were grounded in a concern with the lived experience of engaging with these forms of technology and data, bringing to light, in particular, the emotional and relational elements of these engagements.
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.
Dr Catherine Will recently visited the University of Copenhagen to teach on their Masters in Public Health. While there, she met with the team behind a new project called Personalised Medicine in the Welfare State (MeInWe). The project includes work exploring the use of data in personalised medicine. Catherine was invited to meet the team by their lead researcher, Professor Mette Svendsen.
Catherine also attended a seminar on the topic of Appropriating Technologies organised by Aalborg University. The seminar took place over two days, and included a series of presentations on how people make creative use of technologies, how developers engage with users, and how people may engage with technologies in ways unintended by their developers. The organising committee included eminent anthropology researchers with an interest in self-tracking, including Professor Ayo Wahlberg, Professor Brit Ross Winthereik, and Dr Dorthe Brogård Kristensen.
The seminar is part of a series of seminars on the anthropology of data, technology and communities.