Invited paper at UNIL, Lausanne: Records, self-monitoring and everyday data practices

Kate outside le Géopolis, where we delivered the paper

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.

Kate and Catherine in Lausanne.

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.

Abstract:

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.

 

New paper on blood pressure monitoring ‘care infrastructures’

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.



Abstract
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.

Reconfiguring care infrastructures workshop, November 2017

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.

 

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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).

New Working Paper – Self-monitoring for Health: Questions for an Emerging Field

workingpaperWe have uploaded a working paper that draws together existing scholarship from digital sociology and media & communication studies with work from Science and Technology Studies and the Sociology of Health and Illness.

The scholarship and questions we consider in this paper are informing our thinking and plans as the project progresses. We’d welcome your comments.

You can download the paper here and read the abstract below.

Abstract

This paper aims to contribute to critical studies of self-monitoring by drawing together existing scholarship, emerging predominantly in digital sociology and media and communication studies journals, with scholarship from Science and Technology Studies (STS) and Sociology of Health and Illness (SHI) on other health technologies used away from the clinic. We take stock of existing work and suggest potential avenues for further exploration. We start by offering a critical summary of scholarship on self-monitoring, arguing that an important theme has concerned the meaning and value of data. An initial focus on media and commercial discourses, providing political economy and Foucauldian analyses, has been complemented and complicated by emerging ethnographic work, particularly on the Quantified Self movement, which suggest plural understandings and valuations of self-monitoring data, and limits to data flows. A key contribution of our argument is that there may be more to self-monitoring than data and data flows. We suggest that a technology-in-practice perspective might help to explore the diversity of monitoring practices, bringing into relief issues that are already central in SHI and STS.  We draw on evidence from comparison cases of other health technologies used in domestic spaces (telecare and pharmaceuticals) to highlight three conceptual areas that have resonance for self-monitoring: (i) non-use, resistance and unexpected uses of technologies, (ii) the distributed work of self-monitoring within existing care infrastructures, and (iii) the emotional meaning of self-monitoring. We end with a series of questions that we propose could help orientate and further enrich future scholarship into self-monitoring.

BSA MedSoc Digital Health Special Event, September 2017

From the 13th-15th September, the Tracking Ourselves? research team attended the British Sociological Association’s annual Medical Sociology conference where we presented work from phase 1 of the project, exploring commercial understandings of health self-monitoring. The presentation was part of a special event on digital health that both Flis and Ros participated in.

Flis gave an introductory talk that provided an overview of the sociological literature that is currently being – and that could be – brought to bear on social scientific research into the area of digital health.

This paper proved a useful foundation for presentations from Sue Ziebland (Oxford) and Fiona Stevenson (UCL) whose papers both explored the issue of how people retrieve and use health information online. Following on from them, Ben Marent (Brighton) presented findings from EmERGe, an EU-funded project to develop and evaluate an HIV patient mHealth platform.

Ros presented phase 1 data looking at commercial expectations of health self-monitoring practices; in the paper, she looked at the material design of products to consider how objects are designed with particular kinds of use in mind.

MedSoc digital health panel
Panel Discussion at the digital health special event. From left to right, Sue Ziebland, Flis Henwood, Ros Williams, Fiona Stevenson, and Ben Marent. Photographed by Kate Weiner.

The digital health special event ended with a panel discussion that lead to great discussions around the possible overlaps and disjuncture between commercial expectations and people’s concrete, everyday practices. Questions and conversation also touched upon the interconnection of practices like self-monitoring, and people’s broader efforts to locate health information from sources other than health care professionals.

Catherine and Kate were also at the conference; Catherine presented in the Critical Public Health stream [abstract] on new configurations of public health and welfare with a focus on housing and homes. Kate gave a paper on home blood pressure monitoring [abstract] looking at pilot data from the Tracking Ourselves? project.

New book: New Practices for New Publics

booksprintfrontcoverKate and Catherine recently participated in a “book sprint”, as part of an ESRC Seminar Series called ‘New Practices for New Publics‘.

This was an innovative series of events designed to bring together cutting edge thinking in social science, drawing on theories of social practice, with the experiences of civil society organisations, especially those in the community and voluntary sector. The series explored what these organisations ‘do’ – attending to the complexities of everyday work in fields including health, education, social care, housing and other community action.

The book sprint was aimed at condensing some of the themes and work which emerged from the seminar series, and acted as a collective and collaborative approach to book writing, where everyone writes, edits and redrafts what emerges during a week period.

The final product of the book sprint – New Practices for New Publics? Theories of social practice and the voluntary and community sector – is available for download here.

You can follow tweets from the book sprint on twitter or learn more about the writing concept at book sprint’s website.

Participation in the seminar series and book sprint has helped to shape and develop our thinking about theories of social practice, providing ideas about everyday practice that will inform the tracking project.

Practice Theory and Public Health, September 2017

This week – 7th and 8th September 2017 – Ros went to Lancaster University for a two-day workshop called “Practice Theory and Public Health – a workshop on scale, matter, method and challenges”. The event was attended by people with an interest in the possible intersections of social practice theory and methodology, and the broad scope of work in the area of public health.

The organisers of the event, Cecily Maller and Stanley Blue gave an initial overview. They used the opportunity to raise an interesting point: the labels of “healthy”  and “unhealthy” may be more usefully understood as meanings associated with people’s practices and, though one doesn’t always think of practices as being un/healthy, perhaps most practices can be said to have some kind of ‘health outcome’.

The two days threw up a lot of thought-provoking discussion around language. The notion of an public health ‘intervention’, for example, sparked some debate about whether practice theory can change, as well as trace, what people do. Underlying this was a question of whether users of practice theory ought to be attempting to produce changes in the dynamics of practice. Unsurprisingly, this issue remained unresolved!

Ros presented work from phase 1 of Tracking Ourselves, exploring the ways that commercial actors understand self-monitoring practices. You can read the abstract from the paper below.

 

Our paper was one in a wide range of topics. To name only a handful, Cecily Maller gave a presentation on designing  a residential estate in Mebourne for residents’ wellbeing. Maller showed survey and interview data revealing how people made (sometimes unexpected) use of the built environment – an outdoor gym was used by children for play, for example. Stanley Blue’s paper on understanding obesogenic environments prompted really exciting discussion about what constitutes a practice. For example, where does it begin and end, and what’s the starting point for studying its dynamics? Does eating including snacking, drinking? Or are we concerned with ‘meal’-ing!

A fantastic presentation on British women’s alcohol drinking practices from Kat Jackson offered insights into alcohol’s enfolding into how interviewees cared for family, partners, and themselves. It brought into relief the complexity of describing drinking alcohol as unhealthy – accounts from some of her informants suggested drinking was an important and enriching part of their lives.

A different empirical site drew out similarly interesting questions around how we can glean information about people’s practices; a two-way radio programme in Cape Verde during the Zika outbreak (presented by Laurie Denyer Willis) allowed people to text in descriptions of their practices, revealing problems in the assumptions of public health advice about putting lids on water containers – water infrastructures in Cape Verde made lidding bottles challenging, a point revealed through considering elements of practice.

Altogether, the event offered a valuable opportunity to think about how the Tracking Ourselves studies could contribute to public health understandings of health self-monitoring. In parsing some of the heterogeneity of self-monitoring practices, as phases and 1 and 2 are revealing, we can contribute to a richer grasp of how self-monitoring practices are currently  being undertaken by individuals.

Below is the title and abstract of our talk at the above event.

Everyday Practices of Health Self-Monitoring: Exploring Commercial Imaginaries of Self-Monitoring

Self-monitoring, using products including apps, blood pressure monitors and weighing scales, is increasingly invoked in policy as a tool for promoting healthy lifestyles. It is anticipated that measurements previously done in clinics will be undertaken at home by individuals using devices they acquire themselves, saving the NHS time/money and reducing obesity and heart disease. We report on a study of these newly emerging or proto practices – framed as a public health salve rather than problem – suggesting that they offer useful insights for practice theory’s application to public health, which has so far focussed more on the ‘usual suspects’ of problematic health behaviour including eating and smoking.

In our paper we start from the work done by commercial actors seeking to reinvent products associated with the clinic as consumer goods that can be integrated into ordinary life. While aware that these commercial imaginaries cannot be assumed to determine the actual use of products, we engage with these arguments in work by Shove and Pantzar (2005) to discuss how commercial actors attempt to shift the meanings of monitoring along with new materials (products) emphasising the playful, relaxing and sociable elements of the practice. Contrasting commercial versions of self-monitoring with those in public health we suggest that our understanding of these practices can be improved if we consider the efforts of commercial actors to reinvent self-monitoring, suggest ways in which this alters our understanding of the category of ‘health practice’ and of the health implications of shared nature of activities in the home.

 

Science in Public, July 2017

sip2This week, Ros was at the Science in Public conference in Sheffield to present our paper Self-Monitoring Practices: Imagining Users, Shaping Markets as part of a panel on the ‘contemporary politics of disability and enhancement’. The presentation offered reflections from a paper that is concerned with everyday health monitoring using technologies acquired independently of health professionals. We focus on how industry and policy stakeholders envisage self-monitoring practices, and how these expectations are inscribed in products. We consider the cases of blood pressure monitoring and weighing scales in the paper.

The panel we presented in featured work from Gareth Thomas from Cardiff exploring public discourses surrounding Down’s syndrome, and Daniel Navon from UC San Diego discussing his work on the population-level implications of non-invasive prenatal genetic testing. The three linked nicely with Kirsty Liddiard, Dan Goodley and Fiona Kumari Campbell’s papers earlier in the day on enhancement and disability.

sip1The conversations prompted by all of these papers were as to be expected given the overarching conference theme of ‘Science, technology and humanity’; questions lead to great discussions about the roles of the state and the individual, the shifting definitions of illness and disability, and the manner in which new (and older) technologies inflect on these issues. The paper we presented here opens up the question of how users undertake self-monitoring, so colleagues at the conference were also really interested to hear more about the ongoing fieldwork we are undertaking, interviewing users of the kinds of technologies our presentation focused on. In addition, having both American and UK examples in this panel offered a nice opportunity to compare the current situations of British and American healthcare services, the different landscapes that these various technologies work across.

You can read the abstract for our paper here.

Psycho-Social Lives As Method, July 2017

This week, Ros spoke at the University of Sheffield on the project methodology. In this presentation, entitled Tracking ourselves?: Methods for exploring everyday health self-monitoring practices, she ran through the methods for phase two which we began at  the start of June. Exploring the prevalence of normative accounts of health and the use of materials in interviews, Ros presented some data from the pilot interviews (conducted between May 2014 and July 2015, which you can learn more about here) and from initial interviews with people who track body mass index (BMI) which we started in June 2017 and which are well underway.

psychosocialmethod

The event, Psycho-Social Lives As Method was an afternoon workshop, with presentations focusing on a variety of contemporary issues relating to health, including global mental health, young people and health wearables, and valuation practices in health commissioning.

Ros spoke alongside Stefan Ecks (University of Edinburgh), Matthias Benzer (University of Sheffield), Eva Hilberg (University of Sheffield), China Mills (University of Sheffield) and Emma Rich (University of Bath)

The workshop, which China Mills and Eva Hilberg organised, will lead to a shared bibliography for social scientists interested in novel methodologies for health research.

British Sociological Association Conference, April 2017

In the initial months of Tracking Ourselves, we’ve spoken to a number of commercial stakeholders working in the area of self-monitoring, and have attended several key industry events. Alongside this, we’ve also been looking at the market of self-monitoring products in some detail to develop a clearer sense of how commercial stakeholders understand practices of self-monitoring and the users undertaking them. The recent British Sociological Association annual conference at the University of Manchester gave us an opportunity to explore some of the themes from our analysis of texts and objects alongside other social science researchers working broadly in the field of digital health. 


Below is a copy of the paper abstract, presented on day one of the conference.

This paper is concerned with everyday health monitoring using technologies acquired independently of health professionals. We focus on how industry and policy stakeholders envisage self-monitoring practices, and how these expectations are inscribed in products. As much of the current interest in this area focuses on digital technologies and fitness/wellness apps, we expand discussions by exploring more mundane technologies that sit squarely between the medical and consumer realms, like home blood pressure monitoring.

Sociological research to date, concerned with wearable devices and smartphone apps, focuses on how such platforms produce individuated selves, displaying the responsible qualities of late modernity’s good self-tracking citizens. Proprietorial tendencies of commercial and state actors are also central in these sociological accounts (Till 2014) where the convergence of bodies and technologies may now be producing forms of ‘digital biocapital’ (Lupton 2016). Though such focus on discourse provides valuable insights into the political economy of self-monitoring, it is equally important to attend to the work of expectation in how these technologies are conceived and promoted.

Accordingly, we look at how self-monitoring technologies are ‘scripted’ (Akrich 1992) with particular users/uses in mind. We analyse a sample of texts from policy and commerce produced since January 2015, to demonstrate how these expectations have, as many envisaged futures tend to (Brown and Michaels 2003), very material implications for both health policy and the consumer self-monitoring market.