Health and Care Data: Improving Lives Through Research event

Prof Andrew Morris, explaining that the healthcare sector lags behind other areas in the implementation of AI technology

On the 3rd December 2018 Jacob attended an event entitled ‘Health and Care Data: Improving Lives Through Research’, which was organised by NHS Digital and took place in Leeds. The event was an opportunity for NHS Digital to promote their current projects and network with employees from across other non-clinical divisions of the NHS which manage data, along with clinicians and researchers.

Presentations at the event were focussed on how potential uses of data in the NHS could be maximised for patient and public benefit, and a small part of this related to opportunities for research. Speakers highlighted the imminent release of the NHS Long Term plan, due out between the 12th and 21st December 2018. The long term plan will include a 10 year vision for research and innovation, across three life periods (denoted by the terms: ‘early life’; ‘staying healthy’; and ‘ageing well’), four key priorities (cancer; cardiovascular and respiratory; mental health; learning disabilities and autism), and across five enablers (workforce, primary care, digital innovation and technology, research and innovation, engagement).

The event gave a general sense of optimism for the future of data as a tool for improving care for patients, including several allusions to a future where patients are enabled to submit their own data (including blood pressure readings) to their healthcare providers through online portals. Indeed, it was mentioned that with certain electronic patient management systems, this is already possible, though the facility is underused. Our next phase of research in the Tracking Ourselves project will explore clinicians’ views of the self-monitoring of blood pressure and BMI, and our results may help to inform this vision of the future.

Meeting healthcare academics at Brighton & Sussex Medical School

Meeting healthcare academics at Brighton & Sussex Medical School

Last week, on the 29th November 2018, Catherine, Flis and Jacob ran a seminar for academic staff at the Brighton & Sussex Medical School. The aim of the session was to explore a series of ‘vignettes’, or short excerpts, from our interview data, with academics who have experience of providing healthcare. We wanted to know how well these vignettes would work in a focus group setting with GPs and practice nurses, as we intend to run four focus groups of this sort early next year.

Nine people attended the seminar in Brighton, and all of them were very happy to help us work through the vignettes. We were able to learn a lot about what extra information we should provide alongside these excerpts to help our participants understand them, and we were happy to hear the attendees’ views of the stories coming from the project so far.

We would like to thank everyone who took part, and we would encourage you all to stay in touch with the Tracking Ourselves team!

 

Researching everyday life

Last week Kate and Ros presented in their home department at the University of Sheffield on the theme of  ‘researching the everyday’, in a seminar organised by their colleague Katherine Davies (https://www.sheffield.ac.uk/socstudies/staff/staff-profiles/davies#tab03).
They talked about ‘engaging material methods to explore everyday health practices’, reflecting on their experiences of using objects like monitoring devices, apps, and records as prompts in interviews.  They also gave some initial reflections on the use of long-duration photo elicitation, including the practicalities of setting up and managing this, and some of the new insights gained as a result of using it.
Kate and Ros were joined in the session by Lauren White, who gave a really thought-provoking presentation on her use of diary methods to document daily life with Irritable Bowel Syndrome (https://www.sheffield.ac.uk/socstudies/postgraduate-research-students/lauren-white).

Making connections in Denmark

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 WahlbergProfessor 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.

 

 

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.

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

New Research Associate joins the Tracking Ourselves project

ros williams
Dr Ros Williams, lecturer and recipient of a Wellcome Trust Fellowship

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!

Jacobcropped
Dr Jacob Andrews, Research Associate on the Tracking Ourselves project

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.

 

New paper on the commercial promotion of blood pressure monitors and scales

CPH2The 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.

CPH1

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.

Abstract:

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.

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.