A new paper from the Tracking Ourselves? project is now available online. Our paper, Navigating standards, encouraging interconnections: infrastructuring digital health platforms has been published in Information, Communication & Society as part of a special issues on ‘Mapping new digital landscapes’.
The article argues for an understanding of digital health platforms as ‘infrastructures’. Engaging with seminal work of Susan Leigh Star, we emphasise the importance of looking at standards as part of infrastructure building, and the broader set of interconnections between different actors and materials within an infrastructure. The abstract is reproduced below. The whole article is available to read Open Access here.
Abstract: Apps, websites and networked devices now offer to help consumers produce, access and share health knowledge, precipitating social scientific concern over the consequences of these so-called digital health platforms. This paper makes a novel contribution to this literature, taking up a recent call from Plantin et al. to adopt an infrastructural lens in exploring platforms. It argues, through empirical analysis of digital health platforms of different sizes, ages and nationalities, that this conceptual tool is necessary to surface the work entailed in creating and sustaining digital health platforms. Additionally, we suggest that the social scientific literature on platforms – and initial efforts to explore their infrastructural qualities – frequently focus too strongly on the dominant technology companies. Instead, we emphasise the value of drawing emergent companies’ platforms into empirical purview through returning to some of the infrastructures literature that informs Plantin et al. – particularly Susan Leigh Star and colleagues. We demonstrate empirically the importance of looking at standards as part of infrastructure building, and the broader set of interconnections between different actors and materials within an infrastructure. In doing so, we demonstrate the value of an infrastructural lens for understanding the density of interconnections that characterise digital health and propose some orientating questions for further enquiry into the infrastructural qualities of platforms.
We are pleased to hear that our paper ‘Thinking with care infrastructures: people, devices and home blood pressure monitoring‘ is among the top 10% most downloaded papers in the journal, Sociology of Health and Illness.
The paper was the first paper to come from the project. In the paper, we argue that the use of self-monitoring devices may be understood as a shared practice that expresses care for self and for others.
This achievement means that between January 2018 and December 2019, our paper received some of the most downloads in the 12 months following its online publication. It also means that our research findings generated immediate impact and supported the visibility of the journal. You can read our paper here.
The latest output from the Tracking Ourselves? project is now available online as an article in the journal Big Data and Society, a publication that invites research debates about big data practices and how they are reshaping relations and ways of knowing. The paper is entitled ‘Everyday curation? Attending to data, records and record keeping in the practices of self-monitoring‘.
The article comes out of the second phase of our research, and looks specifically at the different ways in which people keep records of their self-monitoring. The analysis unpacks the relationships between taking a measure, and making and reviewing records. The paper argues that by paying attention to which data is recorded and the occasions when data is not recorded, as well as the ways data is recorded, it illuminates the diversity of ways in which self-monitoring data may or may not flow or contribute to big data sets.
The article is available to access by clicking here
Below, you can read an abstract of the paper:
Abstract: This paper is concerned with everyday data practices, considering how people record data produced through self-monitoring. The analysis unpacks the relationships between taking a measure, and making and reviewing records. The paper is based on an interview study with people who monitor their blood pressure and/or body mass index/weight. Animated by discussions of ‘data power’ which are, in part, predicated on the flow and aggregation of data, we aim to extend important work concerning the everyday constitution of digital data. In the paper, we adopt and develop the idea of curation as a theory of attention. We introduce the idea of discerning work to characterise the skilful judgements people make about which readings they record, how readings are presented, and about the records they retain and those they discard. We suggest self-monitoring produces partial data, both in the sense that it embodies these judgements, and also because monitoring might be conducted intermittently. We also extend previous analyses by exploring the broad set of materials, digital and analogue, networked and not networked, involved in record keeping to consider the different ways these contributed to regulating attention to self-monitoring. By paying attention to which data is recorded and the occasions when data is not recorded, as well as the ways data is recorded, the research provides specificity to the different ways in which self-monitoring data may or may not flow or contribute to big data sets. We argue that ultimately our analysis contributes to nuancing our understanding of ‘data power’.
Together with web designers at 93ft.com, we have created an interactive web tool that showcases some of the key research findings and stories of self-monitoring in domestic life. The participants’ quotes and images are located around the home to demonstrate how self-monitoring is experienced across different spaces, at different times, alone, with others and how monitors find a place in everyday life. The tool draws attention to the links between devices and the spaces in which they are used, hidden and shared in domestic life. Please take a look and have a play on the tool, which you can access here. Don’t forget to let us know what you think!
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.
After a busy year working on the project, we are sad to say goodbye to Dr Jacob Andrews, who has a new role in research at the University of Nottingham. We’d like to take this opportunity to say thank you to Jacob for all of his hard work on the Tracking Ourselves project, and wish him well in his new role.
We now welcome Lauren White as Research Associate on the project. Lauren has research experience in the field of the sociology of health and illness and the sociology of everyday life. She is particularly interested in the ways symptoms (and the monitoring of them) are negotiated in public and private spaces, and with socio-material relations.
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.