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.
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.
For this event, Kate and Catherine gave a new presentation, describing everyday record-keeping practices for blood pressure and body mass index, based on data arising from the project. Their presentation explored the role of both paper and digital records in people’s record-keeping practices, and described how charts and visualisation were used by some participants to track themselves. They considered what is made visible to whom in self-tracking practices, and reflected on what self-tracking data may not be accessible to healthcare professionals.
Last week, Kate and Catherine gave our first conference presentation from phase 2 research from the Tracking Ourselves? project at the European Association for the Study of Science and Technology (EASST) conference at Lancaster University.
The paper, “Partial vistas: records, self-monitoring and everyday data practices”, analyses data gathered from interviews with over 60 users of blood pressure and weight/BMI self-monitoring technologies. In it, we consider everyday tracking practices, focussing on record keeping, charting and visualising. Looking across the range and combinations of records people create and keep, and what they do not record, retain or review, we ask what is being made visible and to whom? You can read an abstract of the paper below.
The presentation was part of a panel, organised by Minna Ruckenstein (University of Helsinki) and Dorthe Kristensen (University of Southern Denmark), called “Seeing with data and devices”. It included papers from an international range of speakers exploring a really diverse set of topics from conceptualisations of customers through the commercial gathering of “loyalty” data (Markus Unternährer, University of Lucerne), to practices of data collection regarding pet dogs in Calgary, Canada (Morgan Mouton & Melanie Rock, University of Calgary, and Olga Solomon, University of Southern California). You can read more about the panel here.
In this presentation we discuss everyday practices of self-monitoring focussing particularly on record keeping, charting and visualising. We draw on a study focussed on 2 cases: blood pressure monitoring and BMI/weight monitoring. Looking across the range and combinations of digital and paper records people create and keep, we ask what is being made visible and to whom? We are interested in the meaning of records made as well as those misplaced, forgotten or discarded, and readings not taken or recorded. We are also interested in practices of sharing in different ways. In our research we find people who keep no records, or make records but do not review them, and instances where people do not record unwanted or disappointing readings. We note also the continued role of paper charts and records even for those who track digitally. In thinking about the ‘partial vistas’ opened up through everyday tracking practices we extend the notion of ‘filtration work’ (Nielsen, 2015) to include not only what data is shared with others, but also which data is committed to record at all. Further, in trying to understand instances where numbers are unremarkable, not recorded or reviewed, we pursue the idea that monitoring may provide information to be consumed rather than data to be tracked (Knorr Cetina, 2010). In elaborating what is and is not made visible in the local settings of health monitoring, we offer insights into what might remain inaccessible to companies in the digital economy.
Last week, Ros presented findings from the first phase of our research at the International Sociological Association (ISA) quadrennial congress in Toronto, Canada. The paper was entitled Data Mining in the Cloud? Revisiting the Sociology of Digital Health Platforms. You can read an abstract for the paper at the end of this blog post.
In the presentation, we explored data including interviews with commercial stakeholders involved in the production of digital health platforms, alongside analysis of a variety of data from commercial websites, company reports, press releases and news media. The paper argues that it is useful to draw on theory from Science and Technology Studies (STS), particularly theories of infrastructure (from writers like Leigh Star) to explore the wider infrastructures that comprise digital health platforms.
The paper was one of six presented in a session organised by Ben Marent and Flis Henwood from the University of Brighton, which invited contributions focusing on the development of a “Sociological Critique of Digital Health”. Other speakers included Fiona Stevenson, exploring the discussion of internet-sourced information in GP consultations, China Mills who presented her work with Eva Hilberg on the differing imaginaries of mental health and medicine that are enacted in the mental health diagnostic algorithms of the WHO-developed app, mhGAP. You can read their abstracts, along with those of the others speakers on the session webpage.
After presenting the papers, we had a rich group discussion about the diverse empirical spaces of interest to sociologists looking at digital health, from digital patient experience (covered in the work of Caroline Sanders et al, who presented a paper on the possibilities and limits of digitally collection patient feedback on their experience of healthcare provision), to the challenges of locating health information online in a post-truth era (as Václav Štětka et al, whose paper presented analysis of social media data concerning the MMR vaccine debate on Facebook).
Recent work in digital sociology has shown interest in health platforms as site for intensification of government and value creation. Work by Srnicek (2016) on ‘platform capitalism’ proposes a new typology of online platforms, and argues that they exist to gather data as the new raw material of global capitalism. In empirical studies of the largest health platforms, especially those focussed on research which have captured most sociological attention, researchers have described the promissory discourses that encourage ordinary people to store and share personal health data, including that produced by self-tracking (e.g. Sharon 2016, Van Dijck and Poell 2016). This paper draws on analysis of a more extended set of platforms using interviews with commercial and policy actors, ethnographic observations of digital health events and ‘walkthroughs’ (Light 2016) of devices, to examine the multiple logics shaping their development – beyond the search for data. Health monitoring helps companies embed their products and services in everyday life producing engagement from ‘activated’ consumers. At the same time, platforms appeal to governments/health care providers hoping that digital solutions will reduce future spending. Seeking greater specificity around the different platforms and the markets in which they arise, and drawing on recent work in Science and Technology Studies, we suggest that health platforms participate in the negotiation of ‘care’ and care needs at domestic, local and national levels, despite their apparent global reach. The paper argues for an appreciation of the heterogeneous logics and forms contained within commercial attempts to establish and expand digital health platforms as emerging information infrastructures.
We were invited by Giada Dansesi, a Senior Researcher at the Université de Lausanne (UNIL), to give a seminar to the STSLab which is part of the Faculty of Social and Political Sciences at UNIL.
The seminar was on Wednesday 6th June at le Géopolis. You can read the abstract for our paper below.
This is the first analysis drawing on our interviews with people who are engaged in self-monitoring either their blood pressure, or their body mass index (BMI)/ weight. It was great to have an opportunity and incentive to undertake the provisional analysis, and to have an interested audience to test our ideas on.
We also used the trip to learn more about the research into self-monitoring that is currently being untaken at UNIL. Giada kindly arranged a smaller meeting with her research group that took place after we delivered our paper. Along with Giada, we met with Michele Grossen, Franco Panese, Bernard Burnand, Melody Pralong, Laetitia Della Bianca and Sébastien Miserez. In the meeting,they told us about their interesting research – the main project they talked about with us focuses on diabetes self-management for children. PhD students associated with the team are also doing very interesting research on the embodied experience of diabetes, and on period and fertility tracking apps.
Kate and Catherine will be presenting the paper again on 27th July at EASST in Lancaster, where they will again draw on data from our interviews with device users. The paper will build on discussions in Lausanne.
Records, self-monitoring and everyday data practices
In this presentation we discuss everyday practices of self-monitoring focussing particularly on record keeping, charting and visualising. We draw on a study focussed on 2 cases: blood pressure monitoring and BMI/weight monitoring. Looking across the range and combinations of digital and paper records people create and keep, we ask what is being made visible and to whom? We are interested in the meaning of records made as well as those misplaced, forgotten or discarded, and readings not taken or recorded. We are also interested in practices of sharing in different ways. In our research we find people who keep no records, or make records but do not review them, and instances where people do not record unwanted or disappointing readings. We note also the continued role of paper charts and records even for those who track digitally. In thinking about what is made visible through everyday tracking practices we extend the notion of ‘filtration work’ (Nielsen, 2015) to include not only what data is shared with others, but also which data is committed to record at all. Further, in trying to understand instances where numbers are unremarkable, not recorded or reviewed, we pursue the idea that monitoring may provide information to be consumed rather than data to be tracked (Knorr Cetina, 2010). In elaborating what is and is not made visible in the local settings of health monitoring, we offer insights into what might remain inaccessible to clinicians and to companies in the digital economy.
This month, Kate Weiner presented research from Tracking Ourselves? at a two-day workshop at the University of Sussex (15-16th November). The workshop was called Reconfiguring care infrastructures: austerity and innovation in European Welfare Services, and attracted participants from Spain, Germany, Greece, Russia, Denmark, Italy, Netherlands, Norway, UK, and Bulgaria. The event was organised by Tracking Ourselves? team member Catherine Will, Henriette Langstrup and Angela Genova.
The event invited papers that explored the way in which austerity policies, welfare reforms and healthcare innovations relocate or relegate the work and practice of care in particular settings. This was considered in relation a variety of empirical contexts. For example, Ivaylo Vassilev (Southampton) explored narratives of experiences of managing chronic illnesses in Bulgaria and the UK, and Angela Genova (Urbino) considered Italian policy and practice in relation to autism spectrum disorders.
Brit Ross Winthereik (University of Copenhagen) gave a keynote at the event, and Catherine presented a paper that explored new configurations of public health and welfare in the UK context, with a focus on housing and homes.
The paper presented by Kate was entitled The role of self-monitoring in care infrastructures: policy imaginaries and everyday practices. Drawing on research from the first phase of the project, it presented analysis of policy and professional texts to explore how key actors producing and receiving self-monitoring data are imagined in the context of the UK’s NHS. The paper then contrasted these imaginaries with data drawn from 30 interviews with people who monitor their blood pressure. You can read a full abstract for the paper below.
The role of self-monitoring in care infrastructures: policy imaginaries and everyday practices.
K Weiner, R Williams, C Will, F Henwood
The UK’s publicly funded national health service (NHS) is engaged in ongoing digital service provision planning intended to increase service sustainability amidst intense funding pressure. Policies related to this describe futures wherein health self-monitoring data will be shared between individuals and doctors. Through analysis of policy and professional texts, we explore how key actors producing and receiving self-monitoring data are imagined in the local contexts of the UK’s NHS. We go on to contrast these imaginaries with lay people’s accounts of one form of self-monitoring – blood pressure monitoring – drawing on interview data.
Policies lay out obligations underpinning use of an increasingly digital healthcare system: ‘patients’ and ‘citizens’ should want (and demand) capabilities to provide self-monitoring data and access their health records, ultimately being ‘empowered’ to take responsibility for their own health. These imaginaries of individuals in smart homes using smartphones don’t include those who can’t, or don’t wish to, self-monitor or see their records.
These policies also anticipate support from a clinical community who trust (and can make sense of) people’s self-monitoring data, who have time to incorporate these data into practice. This brackets off more ambivalent actors. Clinicians, for example, are concerned about the utility and accuracy of patient data, their responsibilities to act on the basis of such data, and the potential negative effects of self-monitoring on their patients. Our accounts of those who self-monitor both resonate with and counter these clinical concerns, while largely standing in opposition to policy imaginaries They suggest that people who self-monitor do this for a variety of reasons, only some of which align with clinical interests, data and record keeping were often not central to monitoring, and interviewees were perfectly aware that clinicians might be sceptical of their data.
We propose that while policy futures stand to have material implications (Brown and Michaels 2003) for investment and (material) infrastructure, they neither take into account the clinical enclosure (Miller and Rose, 1992) of healthcare, nor understand the nature of domestic care infrastructures (Lanstrup, 2013).