Margaret Mort

Making and Unmaking Telepatients: Identity and Governance in New Health Technologies

The emergence of the field of health care at a distance, or “telehealth,” has been embedded within discourses of high ambition about health improvement, seamless services, empowerment, and independence for patients. In this article, the authors examine how telehealthcare technologies assume certain forms of patients—or “telepatients”—who can be mobilized and combined with images and artifacts that speak for them in the clinical encounter. Second, a tentative intervention is made in these emerging identities in the form of facilitating some alternative discourses about telehealthcare. The aim is to stimulate debate by presenting and contrasting these different approaches to technology development. Such differences take material and discursive shape in the making and unmaking of telepatients, showing important interferences in the shaping of identity and possibilities for governance and participation.

Grounded citizens’ juries:a tool for health activism?

Involving the public in decision‐making has become a bureaucratic pre‐occupation for every health agency in the UK. In this paper we offer an innovative approach for local participation in health decision‐making through the development of a ‘grounded’ citizens’ jury. We describe the process of one such jury commissioned by a Primary Care Group in the north‐west of England, which was located in an area suffering intractable health inequalities. Twelve local people aged between 17 and 70 were recruited to come together for a week to hear evidence, ask questions and debate what they felt would improve the health and well‐being of people living in the area. The jury process acted effectively as a grass‐roots health needs assessment and amongst other outcomes, resulted in the setting up of a community health centre run by a board consisting of members of the community (including two jurors) together with local agencies. The methodology described here contrasts with that practiced by what we term ‘the consultation industry’, which is primarily interested in the use of fixed models to generate the public view as a standardized output, a product, developed to serve the needs of an established policy process, with little interest in effecting change. We outline four principles underpinning our approach: deliberation, integration, sustainability and accountability. We argue that citizens’ juries and other consultation initiatives need to be reclaimed from that which merely serves the policy process and become ‘grounded’, a tool for activism, in which local people are agents in the development of policies affecting their lives.

Calling for Care: ‘Disembodied’ Work, Teleoperators and Older People Living at Home

The provision of ‘distant’ care to older people living at home through telecare technologies is often contrasted negatively to hands-on, face-to-face care: telecare is seen as a loss of care, a dehumanization. Here we challenge this view, arguing that teleoperators in telecare services do provide care to older people, often at significant emotional cost to themselves. Based on a European Commission-funded ethnographic study of two English telecare monitoring centres, we argue that telecare is not ‘disembodied’ work, but a form of care performed through the use of voice, knowledge sharing and emotional labour or self-management. We also show, in distinction to discourses promoting telecare in the UK, that successful telecare relies on the existence of social networks and the availability of hands-on care. Telecare is not a substitute for, or the opposite of, hands-on care but is at its best interwoven with it.

Evaluation of new technologies in health-care systems: what’s the context?

Evaluation is an essential component of the introduction of new technologies, treatment modalities and models of service delivery across the health-care sector. Such work attracts significant levels of public funding, but little attention has been paid to understanding evaluation as more than a set of applied methodological activities. This paper sets out an agenda for a more complex and richer understanding of evaluation as a set of professional and organizational dynamics.

Factors Influencing the Evaluation of Telehealth Interventions: Preliminary Results from a Qualitative Study of Evaluation Projects in the UK

We have carried out a qualitative study of factors that influence the evaluation of telehealth. The study concerned six telehealth projects that are being tracked over two years. In the first 12 months of the study we carried out semistructured interviews and made observations of the participants in the projects. Each case study involved 5–15 subjects, many of whom were interviewed several times. The results indicate that important issues affecting telehealth evaluation include developing and maintaining the technology, reorganization of clinical and administrative duties, professional dynamics, and the difficulty of integrating service provision and evaluation. The findings suggest that the evaluation of telehealth interventions is highly complex, and that this complexity is often underestimated in the design and conduct of evaluation studies.

Animal Disease and Human Trauma: The Psychosocial Implications of the 2001 UK Foot and Mouth Disease Disaster

The 2001 UK foot and mouth disease (FMD) crisis is commonly understood to have been a nonhuman animal problem, an economic industrial crisis that was resolved after eradication. By using a different lens, a longitudinal ethnographic study of the health and social consequences of the epidemic, the research reported here indicates that 2001 was a human tragedy as well as an animal one. In a diary-based study, it can be seen that life after the FMD crisis was accompanied by distress, feelings of bereavement, fear of a new disaster, loss of trust in authority and systems of control, and the undermining of the value of local knowledge. Diverse groups experienced distress well beyond the farming community. Such distress remained largely invisible to the range of “official” inquiries into the disaster. That an FMD epidemic of the scale of 2001 could happen again in a developed country is a deeply worrying prospect, but it is to be hoped that contingency plans are evolving along with enhanced understanding of the human, animal, and financial cost.

Biosensing: how citizens’ views illuminate emerging health and social risks

This article explores material from a citizen’s inquiry into the social and ethical implications of health biosensors. In ‘Our Bodies, Our Data’ a space was afforded for members of the public to examine two forms of health biosensing, and for the authors to research what happens when such examination shifts from the domain of experts to that of citizens. Drawing on data from this inquiry, which form part of a wider research project, ‘Living Data: making sense of health biosensors’, we open up conceptual and methodological questions about how to study innovative health technologies and contribute to debates about the direction of health biosensing by bringing forward the views of a group rarely heard in this domain: the public. The panel of 15 participants was shown examples, handled devices and heard evidence about the development of home ovulation monitoring and direct-to-consumer genetic testing. Citizens identified key areas of concern around the development, design and marketing of these devices, implicating technology companies, public bodies and civil society organisations. The panel articulated serious concerns relating to ethics, trust, accountability, quality and governance of health biosensors that operate ‘outside the clinic’. Their deliberations reflect concern for what kind of society is being made when genetic testing and home reproductive technologies are promoted and sold directly to the public. The panel process allowed us to re-imagine biosensors, wresting their narratives from the individualising discourses of self-optimisation and responsibilisation which have dominated their introduction in Euro-US markets.

From victims to actors : the role of children and young people in flood recovery and resilience

Following a series of recent devastating storms across England with large numbers of homes and businesses evacuated, and despite widespread consensus that further severe flooding is expected, a large section of the population continues to be excluded from developments in flood risk management. We argue that the absence of children and young people from assessments of both the effects of flooding and ways in which it can be mitigated, undermines the effectiveness and legitimacy of policy making. Drawing on in-depth participative research with two groups of flood-affected children and young people we show the range of ways in which they are affected by flooding, some ways they can be better supported, and then how their valuable experience can help shape positive change in policy and practice before, during and after floods. Children developed Flood Manifestos for Change in a direct challenge to their omission from flood governance. The Manifestos and the steps children took to advocate for them can be seen as acts of citizenship, highlighting the capacities of children and young people as flood actors, rather than flood victims.

“That’s where I first saw the water…” : mobilizing children’s voices in UK flood risk management

This article reports on a project, led jointly by Lancaster University and Save the Children UK, that used mobile, creative, and performance-based methods to understand children’s experiences and perceptions of the 2013–2014 UK winter floods and to promote their voices in flood risk management. We argue that our action-based methodology situated the children as “flood actors” by focusing on their sensory experience of the floods and thus their embodied knowledge and expertise. The research activities of walking, talking, and taking photographs around the flooded landscape, as well as model making and the use of theater and performance, helped to “mobilize” the children not only to recall what they did during the floods but also to identify and communicate to policy makers and practitioners how we can all do things differently before, during, and after flooding.

Biosensing Networks: Sense-Making in Consumer Genomics and Ovulation Tracking

How do individuals make sense of their biosensor data? Focusing on two different health biosensors—an ovulation monitor and the consumer gene test—we discuss how individuals interpret their biosensor data by engaging in exchanges on online forums. Participants share and discuss ovulation patterns and genetic susceptibilities by drawing on a range of materials. We argue that it is through these biosensing networks that genetic and ovulation data become meaningful, and that it is through this process that the biosensing body is acquired. We show how discussion and speculation, artefacts and body sensations, anticipations and corporeal imaginaries are part of what constitute and hold together the biosensing body.