Displacement: Critical insights from flood-affected children.

Little is known about how children and young people are affected by evacuation following flooding. Participatory research using creative methods allowed us to elicit flood stories and recovery pathways over time. We found that children's relationships with space and place were severely challenged following evacuation from home. They suffered losses, including loss of agency, friendship networks and familiar space. They experienced distress, anxiety and disillusionment with societal responses. Sustained attention by flood risk and recovery agencies is required to address children's ongoing needs following evacuation. From policymakers recognition is overdue that young people are citizens who already contribute to community flood response and so need to be more explicitly consulted and included in the development of flood risk management.

Ageing with telecare: care or coercion in austerity?

In recent years images of independence, active ageing and staying at home have come to characterise a successful old age in western societies. 'Telecare' technologies are heavily promoted to assist ageing-in-place and a nexus of demographic ageing, shrinking healthcare and social care budgets and technological ambition has come to promote the 'telehome' as the solution to the problem of the 'age dependency ratio'. Through the adoption of a range of monitoring and telecare devices, it seems that the normative vision of independence will also be achieved. But with falling incomes and pressure for economies of scale, what kind of independence is experienced in the telehome? In this article we engage with the concepts of 'technogenarians' and 'shared work' to illuminate our analysis of telecare in use. Drawing on European-funded research we argue that home-monitoring based telecare has the potential to coerce older people unless we are able to recognise and respect a range of responses including non-use and 'misuse' in daily practice. We propose that re-imagining the aims of telecare and redesigning systems to allow for creative engagement with technologies and the co-production of care relations would help to avoid the application of coercive forms of care technology in times of austerity.

Policy, practice and decision making for zoonotic disease management: water and Cryptosporidium.

Decision making for zoonotic disease management should be based on many forms of appropriate data and sources of evidence. However, the criteria and timing for policy response and the resulting management decisions are often altered when a disease outbreak occurs and captures full media attention. In the case of waterborne disease, such as the robust protozoa, Cryptosporidium spp, exposure can cause significant human health risks and preventing exposure by maintaining high standards of biological and chemical water quality remains a priority for water companies in the UK. Little has been documented on how knowledge and information is translated between the many stakeholders involved in the management of Cryptosporidium, which is surprising given the different drivers that have shaped management decisions. Such information, coupled with the uncertainties that surround these data is essential for improving future management strategies that minimise disease outbreaks. Here, we examine the interplay between scientific information, the media, and emergent government and company policies to examine these issues using qualitative and quantitative data relating to Cryptosporidium management decisions by a water company in the North West of England. Our results show that political and media influences are powerful drivers of management decisions if fuelled by high profile outbreaks. Furthermore, the strength of the scientific evidence is often constrained by uncertainties in the data, and in the way knowledge is translated between policy levels during established risk management procedures. In particular, under or over-estimating risk during risk assessment procedures together with uncertainty regarding risk factors within the wider environment, was found to restrict the knowledge-base for decision-making in Cryptosporidium management. Our findings highlight some key current and future challenges facing the management of such diseases that are widely applicable to other risk management situations.

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.

Future patients? Telehealthcare, roles and responsibilities.

Increasing use of information and communication technologies is said to be transforming health care. Telehealthcare enables medical consultations to be conducted between patients and health professionals across different locations. Such technologies imply new relationships between patients and health professionals. This study aimed to understand how policy and practice in relation to telehealthcare suggests new conceptualisations of 'the patient'. In-depth semistructured interviews (n = 38) were conducted with key informants from across the UK, known to have involvement or interest in telehealthcare from a variety of perspectives: health professionals (n = 11), patient advocates (n = 7), telemedicine experts (n = 6), policy-makers (n = 4), administrators (n = 4), researchers (n = 3) and technologists (n = 3). Interviews were conducted either in person or over the telephone, and were audio-recorded. Data were analysed thematically with ongoing cross-validation of data interpretation between members of the research team. The results indicated divergent views about the role of the patient, although accounts of patients becoming 'educated self-managers', taking on a more active role in their healthcare, were predominant. Beliefs about the impact of telehealthcare on patients were focused on perceived 'priorities' such as access, location of services, confidentiality and choice; however, there remains little understanding of the trade-offs that patients are willing to make in the context of technologically mediated health care. The results also highlight ideas around how patients relate to technologies; the extent to which technologies might fragment care and medicine in new or unexpected ways, and participation and absence of patients in decision-making about policies and services. The results of this study have important implications for the ways in which relationships between health professionals and patients are managed in practice, and raise important questions for public participation in service development.

Different public health geographies of the 2001 foot and mouth disease epidemic: 'citizen' versus 'professional' epidemiology.

Recently, there have been calls for health geographers to add critical and theoretical debate to 'post-medical' geographies, whilst at the same time informing 'new' public health strategies (Soc. Sci. Med. 50(9)1273; Area 33(4) (2002) 361). In this paper we reflect on how, alongside 'professional epidemiologies', 'citizen epidemiologies' can have credibility in informing public health policy and practice. We do this by drawing on mixed method and participatory research that used a citizens' panel to articulate the health and social outcomes of the 2001 foot and mouth disease disaster. We consider the difficulties of creating dialogue between on the one hand, time-limited, discrete, theoretical, visible and by implication legitimate, 'professional' knowledge and on the other, ongoing, holistic, experiential and often hidden 'citizen' knowledge of the foot and mouth disease epidemic. Despite significant evidence that in disaster and crisis situations, people need to be actively involved in key 'recovery' decisions (see for example At Risk Natural Hazards, People's Vulnerability, and Disasters, Routledge, London; A New Species of Trouble, Norton, New York), lay accounts, which may in themselves provide valuable evidence about the impact of the disaster, are often ignored. If health geographers are to critically inform 'new' public health policy then we need to consider research approaches that give voice to citizens' understanding of health outcomes as well as those of professionals. If 'new' public health is concerned with the material character of health inequalities, with fostering 'healthy' living and working environments, the promotion of community participation and individual empowerment (Area 33(4) (2002) 361), then we argue that situated, negotiated, everyday geographies of lay epidemiologies can and should inform public health policy.

Principles for telemedicine and telecare: the perspective of a citizens' panel.

Ten delegates at the conference Voluntarism, Health and Social Care were recruited to form a panel of citizens to debate and offer direction for the future of technologically mediated health care. The panel suggested various principles for the development of telemedicine and telecare, concerning: patients, users and carers, approach to service delivery, research and knowledge, and conditions of use. Many of the principles echoed the founding values of the National Health Service, yet have arguably been absent from both policy pronouncements and the telemedicine literature, which largely views new health technologies themselves as 'value free', i.e. developed untouched by social and political relations. A programme of citizens' panels should be developed so that an informed debate can take place about the development of telemedicine and telecare, to underpin policy and practice.

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.

Integrating service development with evaluation in telehealthcare: an ethnographic study.

OBJECTIVES: To identify issues that facilitate the successful integration of evaluation and development of telehealthcare services. DESIGN: Ethnographic study using various qualitative research techniques to obtain data from several sources, including in-depth semistructured interviews, project steering group meetings, and public telehealthcare meetings. SETTING: Seven telehealthcare evaluation projects (four randomised controlled trials and three pragmatic service evaluations) in the United Kingdom, studied over two years. Projects spanned a range of specialties-dermatology, psychiatry, respiratory medicine, cardiology, and oncology. PARTICIPANTS: Clinicians, managers, technical experts, and researchers involved in the projects. RESULTS AND DISCUSSION: Key problems in successfully integrating evaluation and service development in telehealthcare are, firstly, defining existing clinical practices (and anticipating changes) in ways that permit measurement; secondly, managing additional workload and conflicting responsibilities brought about by combining clinical and research responsibilities (including managing risk); and, thirdly, understanding various perspectives on effectiveness and the limitations of evaluation results beyond the context of the research study. CONCLUSIONS: Combined implementation and evaluation of telehealthcare systems is complex, and is often underestimated. The distinction between quantitative outcomes and the workability of the system is important for producing evaluative knowledge that is of practical value. More pragmatic approaches to evaluation, that permit both quantitative and qualitative methods, are required to improve the quality of such research and its relevance for service provision in the NHS.

Health technology assessment in its local contexts: studies of telehealthcare.

Health technology assessment (HTA) is one of the major research enterprises of late modernity, reaching into fields of previously autonomous professional practice, and critically interrogating the organisation and delivery of health care. The 'evaluation' of new health technologies within the field of HTA is increasingly a normative political expectation, as discourses of 'evidence-based' practice run through health policy in the UK and elsewhere. Despite its importance in governing the direction of innovation in health care delivery, there are hardly any empirical studies of HTA in practice. In this paper, we draw on two ethnographic studies of telehealthcare implementation and evaluation in the UK to explore the practical conduct of HTA, and we focus specifically on the social organisation and conduct of randomised controlled trials of these new technologies. The paper examines how evaluation forms a mediating set of practices that make the embedding or normalisation of a new technology possible; and present a simple model of the social and technical contingencies within the evaluation process.

Normative models of health technology assessment and the social production of evidence about telehealth care.

Telehealthcare is a rapidly growing field of clinical activity and technical development. These new technologies have caught the attention of clinicians and policy makers because they seem to offer more rapid access to specialist care, and the potential to solve structural problems around inequalities of service provision and distribution. However, as a field of clinical practice, telehealthcare has consistently been criticised because of the poor quality of the clinical and technical evidence that its proponents have marshalled. The problem of "evidence" is not a local one. In this paper, we undertake two tasks: first, we critically contrast the normative expectations of the wider field of Health Technology Assessment (HTA) with those configured within debates about Telehealthcare Evaluation; and second, we critically review models that provide structures within which the production of evidence about telehealthcare can take place. Our analysis focuses on the political projects configured within a literature aimed at stabilising evaluative knowledge production about telehealthcare in the face of substantial political and methodological problems.