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.
Last week, Kate, Catherine and Flis attended the British Sociological Association’s Medical Sociology conference, MedSoc. On Friday 14th September, a special event was held at the conference on the ‘materialities of care’. The purpose of the event was to launch a new special issue of Sociology of Health and Illness, featuring Kate and Catherine’s recent paper.
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.
— Janice McLaughlin (@JaniceMcl1968) September 14, 2018
The full abstract of the paper and information about the event is available here.
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.
The latest output from the Tracking Ourselves? project is now available online as an article in the journal Critical Public Health, a publication that invites research critically exploring new ways of thinking about public health. The paper is entitled Constituting practices, shaping markets: remaking healthy living through commercial promotion of blood pressure monitors and scales.
The article comes out of the first phase of our research, and looks specifically at commercial material produced around a sample of digital blood pressure monitors and weighing scales. We look at the promotional material developed for the sale of these devices, alongside the devices themselves, their packaging and design. The paper argues that companies operating in this space can be seen to re-work well-establishing practices like weighing and blood pressure monitoring to maintain connections to health whilst moving away from more explicit clinical associations.
A number of free e-prints of this journal article are available here. For those whose institutions cannot access the article directly, please do get in touch with any of us for a pre-print version of the article.
Below, you can read an abstract for the paper.
Commercial actors play a key role in promoting public health agendas as they move into space previously occupied by the state-sponsored health sector and welfare state. This paper examines how marketing of digital self-monitoring devices promotes public health. Existing self-monitoring research often separates or compares positions of commercial actors and users, using a discourse lens to examine commercial actors’ ‘expectations’ and ‘promises’, and user research focusing on ‘practices’. The research on which this paper is based moves beyond this divide, examining commercial and user worlds through a practice lens. We draw on the research’s first stage which examined self-monitoring device marketing, arguing that marketing can be understood as constituting self-monitoring practices. Much literature on self-monitoring focuses on novel networked devices, resulting in potential over-emphasis on change and innovation. Taking cases of well-established bodily monitoring (weighing and blood pressure), we set self-monitoring within a longer history. We draw on Shove’s practice theory which attends to histories of practices and evolutions in practices required elements materials, meanings and competences. Commercial companies are shown to rework well-embedded practices as they constitute the practice elements of self-monitoring. They thus keep in play continuities and novelty, maintaining connections to health while moving away from clinical associations. We argue that, in constituting self-monitoring practices as ‘aesthetic’, ‘enjoyable’, and ‘shared’, commercial actors address implicit resistances to negative connotations of ‘individualised’, ‘responsibilised’ consumer citizens implied in neo-liberal health-promotion agendas, widening the self-monitoring market and promoting public health by creating more desirable ‘lifestyle’ practices.
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.
— Dr. Barbara Marshall (@socbarb) July 20, 2018
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.
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.
A new paper, using data from the pilot interviews from our project, has been published in Sociology of Health and Illness. The journal article was written by Kate Weiner and Catherine Will. In it, they argue that the use of self-monitoring devices may be understood as a shared practice that expresses care for self and for others. The abstract is reproduced below, and the entire paper is available to read Open Access here.
Open Access @SHIjournal paper from Kate Weiner and @will_catherine “Thinking with care infrastructures: people, devices and the home in home blood pressure monitoring” now out! Using pilot data from self-monitoring/#selftracking project #TrackingOurselves https://t.co/MYzqaKpa8c
— ros williams (@roswillz) March 1, 2018
The growing consumer market in health monitoring devices means that technologies that were once the preserve of the clinic are moving into spaces such as homes and workplaces. We consider how one such device, blood pressure monitors, comes to be integrated into everyday life. We pursue the concept of ‘care infrastructure’, drawing on recent scholarship in STS and medical sociology, to illuminate the work and range of people, things and spaces involved in self-monitoring. Drawing on a UK study involving observations and interviews with 31 people who have used a consumer blood pressure monitor, we apply the concept beyond chronic illness, to practices involving consumer devices – and develop a critical account of its value. We conclude that the care infrastructure concept is useful to highlight the socio-material arrangements involved in self-monitoring, showing that even for ostensibly personal devices, monitoring may be a shared practice that expresses care for self and for others. The concept also helps draw attention to links between different objects and spaces that are integral to the practice, beyond the device alone. Care infrastructure draws attention to the material, but ensures that analytic attention engages with both material and social elements of practice and their connections.
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.
— Brit Ross Winthereik (@britwinthereik) November 15, 2017
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).