Big Data and the Power of Narrative

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.

New paper presented at the British Sociological Association Medical Sociology conference (BSA MedSoc)

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.

https://twitter.com/janicemcl1968/status/1040579424939335681?s=11

The full abstract of the paper and information about the event is available here.

EASST paper on everyday data practices in self-monitoring

EASST posterLast 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.

Kate Catherine EASST dinner
Kate Weiner, Dorthe Kristensen, Catherine Will, Linda Hogle, Minna Ruckenstein – enjoying dinner together in Lancaster – and celebrating Dorthe’s birthday

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.

 

 

Abstract

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.

ISA paper on digital health platforms, Toronto July 2018

ISA posterLast 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.

Ros presenting at the ISA in Toronto, Canada.
Ros presenting at the ISA in Toronto, Canada. Image from Nicole Dalmer

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).

 

 

Abstract:

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.

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.

 

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).

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.

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.