- Daniel Lopez Gomez (Universitat Oberta de Catalunya) email
- Jeannette Pols (Amsterdam Medical Centre/University of Amsterdam) email
- Henriette Langstrup (University of Copenhagen) email
- Juan C. Aceros (Universidad Industrial de Santander) email
Following the conference theme Science & technology by other means: Exploring collectives, spaces and futures, this track invites presentations (in traditional as well as other formats) that present work on practices of participation and emergent modes of citizenship associated with care innovation.
Currently, there is a strong focus on participation of patients and citizens in and through technological innovation. Particularly when it comes to care provision, many different types of engagement, formal and informal, have emerged. These include individual patient participation in treatment and care by using technology (e.g. e-health), as well as numerous methods for patient/citizen participation in care innovation (e.g. citizen panels, participatory design, and organizational work).
These different modes of engagement have in common that they: 1) constitute the so-called 'participatory society' (or, 'participatory healthcare'); and 2) often are ascribed democratic values alongside more pragmatic values such as efficiency and efficacy. Yet, the different modes of engagement in care innovation incorporate very different democratic normativities with their own affordances and implications. These relate to issues such as: inequality, representation, welfare state dismantling, commercialization, continuity vs. dynamics in care, etc. Ultimately, different strategies for and modes of engagement in care innovation may bring about new modes of citizenship, e.g. in terms of reshaping the relationship between individual and collective action and between rights and responsibilities.
In this track, we will explore and conceptualize different modes of engagement in care innovation, focusing on the overall question: How is citizenship 'innovated' alongside care - in different (healthcare) contexts and participatory practices? Relevant sub-questions include:
• How is 'the active' or 'good citizen' shaped in different care innovation contexts?
• How do different actors render participation meaningful?
• What can different contexts learn from each other in terms of facilitating meaningful participation and innovation in care?
This track is closed to new paper proposals.
Co-governance in an ageing society: On pushing, biking and caring as active citizenship
Through an ethnographic study of two co-creation initiatives, wherein active older citizens help frail older people to get out and about, the paper explores how co-governance and active citizenship transform old age and the provision of care.
Recent years has seen a transformation in governmental discourse from new public management to co-governance (Pestoff & Brandsen 2013). With co-governance, citizens are urged to participate in both the execution of welfare services as well as the design of local policies and initiatives.
This coincides with a global shift in population composition. Older people today live longer and are more active, healthy and independent than previously. But retirement age has hitherto remained rather stable in Europe, which means that the many active retired people are increasingly invoked to engage in care practices through active ageing policies (e.g. European Commission 2011).
The paper explores how active citizenship is practiced amongst older people volunteering in Denmark. The author has conducted participant observations at two co-creation initiatives, which focus on getting frail older people out and about with the help of active, older citizens, either by biking on rickshaws or by pushing wheelchairs. The author contributes with an ethnographic approach to the debate about co-governance and active citizenship amongst the old. This approach highlights a contested practice, where the volunteers engage in a specific form of citizenship that they both find rewarding and necessary due to cuts in welfare services, as well as highly problematic, because they feel that they become part of a withdrawal of public care. Furthermore, the paper asks if citizenship has become a prerogative for those with the capacity to be active and caring, and if so, what becomes of citizenship once frailty sets in.
Care routines, feeding assistive robotics and the disabled body
Several feeding assistive robotics are described in the literature, but few studies have explored the reception. I report from an ethnographic study of the Neater-Eater robot in a housing institution for the disabled. Due to a number of values the implementation is something of a balancing act.
Several feeding assistive robotics (FAR) are described in the literature; Neater-Eater; My Spoon (Song & Kim, 2012) and Bestic (Juksa (2015). Although there are a number of problems few studies have explored the reception (McDoll & Nejat, 2013). A study has pointed at the challenge the care providers have in imposing a relevant interplay between the citizen and the FAR. When this is unsuccessful the result is demeaning (Nickelsen, 2013). During the last decade feeding has broadly been eliminated from nurses' responsibilities and relegated to non-professionals (Martinsen et al. 2007). It has become low status work and as such it is currently robotized. Despite the lack of knowledge there is an intense pressure from political authorities in Denmark to implement FAR. The Boroughs Association (KL) has for instance established a "Common municipality program for the implementation of welfare technology". In a recent report it is stated that the Danish boroughs by January 1. 2015 have bought 154, but they are only able to apply 95 (KL, 2015).
Based on an ethnographic study of the reception of the British Neater-Eater FAR in a housing institution for the disabled I analyze shifts in the care providers' routines and the implication for the citizens. It is difficult to recruit citizens due to the unpredictability of the human-robot assembly. The analysis points at a number of values from core participants and argues that the implementation is somewhat of a balance and that it is resisted because it is politically, not professionally driven.
Telecare innovations, family configurations and citizenship
We reflect in this paper on the relation between care innovation, family configurations and new modes of community participation and citizenship. We argue that contemporary telecare innovations script new modes of citizenship not only for the patient herself, but also for the family and carers.
This paper highlights how changes in citizen participation in health care can be understood in relation to the reconfigurations of the patient and of the family within socio-technical environments. We used meta-ethnography to conduct a synthesis of 15 papers reporting qualitative research on our topic. The empirical examples illuminate how patients and their families are configured and reconfigured in practical arrangements of human actors, new telecare technologies and emerging discourses of citizenship and participation in health care. We found that telecare innovations in practice rely on existing networks of carers who are co-present with the patient, and that can be mobilized in instances of uncertainty. Further we observed that parents as carers displayed their competence in health information processing through their participation with health technologies. Based on the empirical findings from the literature we reflect in this paper on the relation between telecare innovations, family configurations and new modes of community participation and citizenship. We argue that contemporary telecare innovations script new modes of citizenship not only for the patient herself, but also for the family and carers.
Dementia care infrastructures as citizenship practices
The paper discusses encounters between new feminist materialism and dementia care infrastructures, and the potentials such encounters have for the enactment of new modes of citizenship.
This paper discusses encounters between new feminist materialism and dementia care infrastructures, and the potentials such encounters have for the enactment of new modes of citizenship. Feminist materialist thinkers, such as Barad and Haraway have challenged conventional ways of thinking about the world, the relationships between human and non-human agents, body and mind, nature and culture, language and reality etc. Some have also applied these theoretical lenses to concrete practices (e.g. indigenous studies, environmentalism, disability studies), yet few have explored the possibilities an embodied, material intra-action approach may have on the prospects of citizenship for persons living with dementia. The aim of this paper is to explore these possibilities.
A conventional understanding of citizenship is related to cognitive capacities pertaining to the individual. However, a new feminist materialist understandig would rather hinge citizenship on socio-material intra-action in everyday life situations, that is, on the collective, not the individual, and see it as performative rather than as a status. With this thinking care infrastructures (Langstrup 2013) become potential participatory innovative practices for citizenship performance, not only for the persons with dementia but for all agents involved in the care processes, because to keep the infrastructures going require work from all agents involved, including the ones with dementia (López and Sánchez-Criado 2015). This work is often invisible and consequently not appreciated (Bowker and Star 1996), but it is at the same time what shapes the very infrastructure, and is, therefore, crucial for citizenship performance.
Activating Care: Patient Participation and the Bioeconomies of Parenting
We report on two case studies on childbirth and parenting in Spain: Umbilical Cord Blood Banking and mastitis. Though there are here no patient organizations, both imply practices of associating and sharing knowledge with others, and both lead mothers to participate in “circuits of vitality”
STS scholarship on patient participation has focused on formal organizations, not the least because their growing relevance as legitimate actors to be consulted in the design of medical research and therapies provides an interesting access point to the changing relations between expert and lay knowledges in current technoscience (Epstein, 1996; Callon and Rabeharisoa, 2003; Akrich, 2010). But not all forms of patient participation are channeled through formal associations. In this communication we report on two case studies which dealt with health decisions related to childbirth and parenting in Spain: Umbilical Cord Blood Banking (UCB) and mastitis during breastfeeding. Though in these two cases there are hardly any patient association or forms of "childbirth activism" (Akrich et.al, 2014) to channel participation, both imply practices of associating and sharing knowledge with others, and both lead mothers to take part as donors/consumers in different "circuits of vitality" (Rose, 2007) - the stem cell bioeconomy, in the case of UCB; pharmaceutical research, in mastitis. By attending to the more fluid and subtle forms of participation that mothers thinking of preserving UCB or suffering from mastitis get involved in, we propose a wider understanding of patient participation as "activation of care". We are particularly interested in emerging forms of biosociality in digital environments (online communities, digital forums, Whatsapp groups), where caring is deeply entangled with economic considerations, moral imperatives and gender and class inequalities.
Care innovation and participation in mHealth development: the HIV 'app'
This paper explores practices of ‘invited’ participation in mHealth innovation, arguing that understanding these as non- innocent ‘care practices’ enables a focus on new modes of care emerging alongside the mHealth platform and on how we are co-constructing these through our sociotechnical studies.
This paper reflects on the practices of participation taking place in the sociotechnical evaluation element of a 5-year care innovation project (EU Horizon2020) that is developing, implementing and evaluating an mHealth platform for self-management in HIV care. We reflect on the first year of our engagement with the HIV community to explore the participative practices that are emerging and the relationship between individual and more collective forms of participation as people with HIV engage both as 'patients' who may use the app in their treatment and care and as a more collective group of 'people living with HIV', engaged in a process of co-design to develop and evaluate the app from design stage to routine use.
To make sense of emergent participation practices, we engage with Wehling's notion of 'invited' participation and Nielsen's notion of participation as 'convincing-through-dialogue', a 'soft technology' of participatory society. We also work with Langstrupp and Nielsen's conceptualisation of eHealth technologies as 'participatory technologies' that pose as 'soft structures' to their users and the idea that participatory practices may therefore be seen as 'tactics' that result in users 'making do' with arrangements that are given to them. We argue that turning to 'matters of care' (Puig de la Bellacasa), and understanding these participatory practices as non-innocent 'care practices' might enable us to retain focus not only on the new modes of care emerging alongside the mHealth platform but, as importantly, on how we are co-constructing these through our sociotechnical studies.
Implications of Introducing Robotics into Home Nursing Care
An integration of personal service (shower) robotics into home nursing care implies individual and organizational changes, and challenges users and care providers. The paper discusses how the innovation rephrases human values and alter established forms of user participation and service organization.
The introduction of personal service (shower) robots into home nursing care services is an innovation of services that presupposes responsible and active care receivers who are able to utilize the technology. If successfully innovated, users are empowered and able to obtain self-sustained personal hygiene and live longer at home. The outcome is expected to be a more efficient service provision and reduced burden on care providers. A major argument is that current solutions are costly, invasive and uncomfortable for both service providers and receivers. However, the service innovation challenges conventional methods in home nursing care. It alters ways of user participation and relationships between participating actors: users, care providers and families. Through the innovation process, users are expected to make choices, have an influence and to take risks. Public services are expected to be more efficient and less "hands-on" due to demographical changes. In our research on integration of robotics into nurse care services, these challenges are addressed. By conducting individual and focus-group interviews with caregivers and user representatives, it was found that the innovation implies a rethinking of technology and values such as independency, dignity and autonomy. An important question is choice of users - who will benefit from the innovation. The service innovation also rephrases and poses new ethical questions and introduces new risk issues. Moreover, as organization culture, work routines and attitudes are expected to be affected, an ambivalence is seen with regard to whether the innovation implies a major shift or just a slightly change for services.
Bioethical citizenship in France today, or the institutionalized autonomy of judgment on biomedicine.
This paper relates to current bioethics’ governance in France. It aims to highlight different modes of engagements implied by this form of regulation of biomedicine, in which participatory apparatus contribute to a centralized administration of moral judgments regarding health and care innovations.
Bioethics' current French arena invites to analyze the socio-political dynamics coming along biomedical practices and technologies - from genetic information or embryonic cells research to organ donation or end-of-life decisions… Through its institutionalization process, bioethics moved from administrating conflicts of values in the social interweaving of biomedicine to deciding ontologies, relations to life, bodies or filiation. At the occasion of this track, the focus of this presentation will be on how participations of individual citizens are narrated and implemented around the moral involvements associated with contemporary biomedicine. Based on a range of ethnographic observations, qualitative interviews and literature reviews, this work is part of a research regarding bioethics' governance. Institutionalized public debates and citizens' consultations regarding ethics are flourishing in the movement of participatory imperatives in science and technology political decisions. In this regard, three distinct recent French experiences will be illustrative entry points, particularly towards territorialized organizations and their implications for civil bioethical innovation. From these, the interest will be on how professionalization and prescription outlining the bioethics' field incorporate participative measures. Notably, governmental agencies' agents, healthcare and research committees' members, hospital professionals and academics are dominant players leading the legitimizations of knowledge and distributions of abilities among individuals. Thus trying to identify the path for Health Democracy when the emphasis is on biotechnological determinants, we may question the citizenships built towards bioethical individual and collective evaluation and positioning, and the emancipation, freedom or autonomy this regulatory science allows and/or supports.
Self-monitoring, PROMs and enactments of responsible citizenship.
The paper explores how self-monitoring care infrastructures involving PROMs reconfigure responsible citizenship in an age of Value-driven-healthcare.
Arguments for technology-assisted self-monitoring for treatment and prevention as means for empowerment of patients and citizens are running an ever-closer partnership with arguments for healthcare system transformation toward so-called value-driven healthcare (Porter 2010). Related is a change in self-monitoring arrangements from primarily relying on self-administered clinical tests, such as blood-pressure, peak-flow, or blood glucose, to also or primarily relying on continues monitoring of patients' self-experienced health in the form of online provided PROMs - patient reported outcome measures. Data from PROMs have been cast as a central lever for a healthcare system based on above all the value it provides for its patients. Caring for yourself and sharing your data is also caring for the welfare system.
In this paper I will draw out some strands of inquiry in an upcoming project on eHealth assisted self-monitoring and self-care among breast cancer survivors which primarily rely on symptom-reporting and PROM. I am interested in exploring the enactments of responsible citizenship within this and similar self-monitoring care infrastructures where patients are invited to participate in - not just the management of their own health problems but equally in the rearrangement of the health services in more 'responsible', 'sustainable' or 'value-driven' ways. I want to engage with the concept of "response-ability" (Martin et al. 2015) that may help understanding what happens when people are asked to care for themselves and for the welfare state through technologies of participation.
Inclusiveness of Participation in Precision Medicine Projects: a Comparative Analysis
Our paper investigates the participatory features of precision medicine through a comparative analysis of the “Precision Medicine Initiative” (PMI) in the US, and the “100K Genomes Project” in England.
Our paper investigates the participatory features of precision medicine - a heading of increasing traction for several biomedical projects aimed at reforming clinical care by mining individual differences - starting from an STS framework grounded in the model proposed by Kelty and Panofsky (2014) with the identification of seven dimensions of participation.
The popularity of precision medicine has been rising steadily following Obama's launch of the "Precision Medicine Initiative" (PMI) in the US. In our work, we have laid the groundwork for a comparative analysis of the PMI vis-à-vis similar initiatives undertaken in other contexts, in particular the "100K Genomes Project" currently ongoing in England. Specifically, we focus on how the epistemic scales of analysis selected in different projects as precision resources (genomes, lifestyles, etc.) shape participatory practices, and vice versa. In line with the reconfiguration of the so called "participatory society", these initiatives are embracing different types of engagements, formal and informal, especially in terms of data sharing and involvement in the research design, as in the partially interactive elements of PMI with "Requests for Information" and "Feedback Site", or in the procedures foreseen by 100K Genomes Project for the "Participant Panel" and the "Rare Disease Nomination Form".
Here we chart the requirements and procedures for participating at these two levels (data sharing and research design) also on the basis of our own engagement experiences, tracing the first contours of a comparative evaluation of Precision Medicine, thereby highlighting the notions of inclusiveness and representation that are embodied in the different practices.
A heroes' story; the entrepreneurial configuration of users and autonomy in the independent living programmes for people with intellectual disability in Spain
This paper is an ethnographical reflection on the self-motivated and entrepreneurial configurations of usership and autonomy emerging from independent living programmes for people with intellectual disability in Spain.
The Act on Promotion of Personal Autonomy and Care for Dependent People, the entry into force of the UN Convention on the Rights of Persons with Disabilities, and the emergence of the independent living paradigm, produced a significant change in how the organizations in the field worked out their support programs in Spain. Within this framework, during the last 10 years this sector lived a split of programs working on the promotion of independent living, mostly linked to live in "the own home", and based on user-centred services.
Drawing on the ethnographic involvement within the Catalan Foundation of Down Syndrome, we will tell the story of the programme "I'm going home", an independent living support service where people with ID choose with whom and where they want to live. Support here is focused on developing the "Plan for Independent Living", previously elaborated by the service professionals together with the users and their relatives. Building from here, the paper examines the discourses, practices and sociomaterial arrangements that enact and sustain an independent life, and examines the configurations of usership and autonomy emerging from the service. In particular, it focuses on the production of a constantly self-motivated and entrepreneurial user. A "quotidian hero", as organisations working in the field usually define them. Someone who is active and open to continuous learning of new skills and abilities. The paper ends with a reflection on the implications of these processes in shaping disabled people's agency, as well as on their individual and collective identity.
Surveillant care for placed children
The Danish welfare system is interwoven with negotiated forms of surveillance enabling the provision of welfare to citizens. This paper explores one case: How social workers struggle to surveil the wellbeing of placed children and how placed children, in turn, struggle to relate to their social worker.
The Danish welfare system is intimately interwoven with forms of surveillance enabling practitioners to know the citizens for whom they must care.
However, as Foucault argued, the relation between surveillant practitioner and surveilled citizen is by no means straightforward. It drifts along action upon action in an evasive tangle.
This paper investigates one example of such a tangle: Namely, the case of social workers and placed children working to become better related through video conferencing, texts and chat.
In Denmark, social workers working with the municipalities are responsible for surveilling, controlling and caring for the wellbeing of placed children. Similarly, social workers are also obliged to include children as participants in their own case.
To this end, social workers are dependent on intimate and trustworthy knowledge of children's everyday life. However, as Latour argued with the oligopticon, this type of knowledge is difficult to obtain and always only partial. And, decisively, it often requires some degree of cooperation from children. However, social workers are not simply accepted by children who often struggle with the 'woman from the municipality' who, in some cases, instigated their removed from home.
The observed situation thus complicates both the ambition of participation and the need for a surveillant welfare practice.
Consequently, this paper explores three questions: a) how do social workers manage to surveil the wellbeing of children, b) how do children relate to social workers' surveillance, and c) how could we conceptualise the relation between welfare and surveillance in an age of participation.
Reshaping Health Technology Assesment through public participation
Health Technology Assesment is increasingly incorporating public participation in the evaluation of new technologies. This paper explores in which ways public is being involved in the assesment process.
Health Technology Assesment (HTA) evaluates new technologies, including diagnostic and therapeutic procedures, technical dispositives, medical equipment, prevention and rehabilitation programmes to inform policy decision making. HTA are a good example of the relationship of new modes of citizenship. HTA use standardized methods and expert (mainly clinicians) consensus to synthesise information on clinical, economic, social, ethical and organizational implications of the technology. Increasingly, HTA is starting to include public participation mainly in 3 ways. In the first place, asking the public to identify and prioritize technologies to asses. Secondly, incorporating patient perspective through their experiential knowledge. and finally, contributing to the process of evaluation from the problem formulation to the definition of the relevant expected outcomes, to reference values and care preference. Logics behind this increasing involvement speak about transparency, democracy, but also cost-effectiveness. Used methodologies go from virtual consultations, consensus techniques to qualitative studies. Public involved include patient association representants, lay patients, carers, expert patients and, general public. The objective of this communication is to explore and conceptualize public participation in HTA through literature and explore what could it learn from other contexts and scientific practices, especially from STS, to facilitate meaningful participation.
This track is closed to new paper proposals.