Participation through the lens of care: Situated accountabilities in the codesign of a digital health platform for HIV care.

Participation of citizens and service users is increasingly commonplace in research, policy and technology development. Alongside this development, social scientists have become increasingly incorporated into large-scale research and innovation projects to facilitate participatory spaces. This requires reflection on the mechanisms, outcomes and, ultimately, the accountabilities of participation. In this paper, we propose the lens of care framework for approaching such reflections. We illustrate its value by using it to account for our role in establishing participatory spaces as part of a European Horizon 2020-funded research and innovation project, entitled EmERGE. We describe the codesign processes we developed and implemented with the aim of enabling heterogeneous voices, distinct experiences and multiple ideas to be articulated to inform the development and implementation of a digital platform for HIV care. We show how the lens of care framework enables us to trouble participation along prior theoretical distinctions between patients/citizens roles, invited/uninvited spaces and inclusive/scientistic voices and provides novel lines of inquiry to capture the relational and emergent processes of participation in digital health innovation. In the EmERGE project, spaces of participation were co-created within and by the community, whose members skilfully arranged the material, social and temporal set-up. Within these spaces we were able to articulate voices, deliberate knowledge and study the potentialities of technology so that initial technological inscriptions of empowerment through information-push were challenged and were, eventually, replaced by more interactive forms of clinician-patient engagement in digital HIV care. Through the lens of care, this paper aims to provide a reflective tool for researchers and practitioners who are involved in the design, implementation, and evaluation of participatory projects.

Digital health: A sociomaterial approach.

The notion of digital health often remains an empty signifier, employed strategically for a vast array of demands to attract investments and legitimise reforms. Rather scarce are attempts to develop digital health towards an analytic notion that provides avenues for understanding the ongoing transformations in health care. This article develops a sociomaterial approach to understanding digital health, showing how digitalisation affords practices of health and medicine to cope with and utilise the combined and interrelated challenges of increases in quantification (data-intensive medicine), varieties of connectivity (telemedicine), and unprecedented modes of instantaneous calculation (algorithmic medicine). This enables an engagement with questions about what forms of knowledge, relationships and control are produced through different manifestations of digital health. The paper then sets out, in detail, three innovative strategies that can guide explorations and negotiations into the type of care we want to achieve through digital transformation. These strategies embed Karen Barad's concept of agential cuts suggesting that responsible cuts towards the materialisation of digital health require participatory efforts that recognise the affordances and the generativity of technology developments. Through the sociomaterial approach presented in this article, we aim to lay the foundations to reorient and sensitise innovation and care processes in order to create new possibilities and value-centric approaches for promoting health in digital societies as opposed to promoting digital health per se.

Platform encounters: A study of digitised patient follow-up in HIV care.

Digital technologies are increasingly embedded in clinical encounters, reconfiguring the basis on which health care is delivered. Thereby, the delivery of care shifts from territorial locations in clinics and temporal modes of co-presence towards digital platforms. Drawing on a sociotechnical evaluation of digitised patient follow-up in HIV care, this paper argues that the forms of interactivity practised in platform encounters cannot be adequately understood through traditional interaction frameworks such as Erving Goffman's interaction order. To conceptualise the new informational space and temporal mode of 'response presence' within which platform encounters are conducted, the paper draws on theoretical advances made by Karin Knorr Cetina who further developed Goffman's interaction order to describe interactions augmented by 'scopic media'. A comprehensive framework is presented to elaborate the distinct qualities of interactions occurring in face-to-face, tele-interaction and platform encounters and to analyse their affordances based on doctor and patient experiences. This framework is intended to stimulate further research on how new interactional forms between doctors and patients will reconfigure roles and responsibilities as well as wider structures of digital society. Furthermore, it can also support practical guidance of when and how different forms of clinical encounters may be integrated in care pathways.

Healthcare practitioner views and experiences of patients self-monitoring blood pressure: a vignette study.

BACKGROUND: Home self-monitoring of blood pressure is widely used in primary care to assist in the diagnosis of hypertension, as well as to improve clinical outcomes and support adherence to medication. The National Institute for Health and Care Excellence (NICE) care pathways for hypertension recommend specific guidelines, although they lack detail on supporting patients to self-monitor. AIM: To elicit primary care practitioners' experiences of managing patients' home blood pressure self-monitoring, across surgeries located in different socioeconomic areas. DESIGN & SETTING: A qualitative focus group study was conducted with a total of 21 primary care professionals. METHOD: Participants were GPs and practice nurses (PNs), purposively recruited from surgeries in areas of low and high deprivation, according to the English indices of multiple deprivation. Six vignettes were developed featuring data from interviews with people who self-monitor and these were used in five focus groups. Results were thematically analysed. RESULTS: Themes derived in the thematic analysis largely reflected topics covered by the vignettes. These included: advice on purchase of a device; supporting home monitoring; mitigating patient anxiety experienced as a result of home monitoring; valuing patients' data; and effect of socioeconomic factors. CONCLUSION: The work provides an account of methods used by primary care practitioners in the management of home blood pressure self-monitoring, where guidance may be lacking and primary care practitioners act on their own judgement. Findings complement recent policy documentation, which recognises the need to adopt new ways of working to empower patients (for example, additional support from healthcare assistants), but lacks detail on how this should be done.

Negotiating the practical ethics of 'self-tracking' in intimate relationships: Looking for care in healthy living.

In this paper, we offer insights into practices of tracking as part of healthy living through talk about home blood pressure and weight from adults living in the UK. Drawing on theoretical resources from feminist ethics of care and Science and Technology Studies on care as socio-material practice, we build on interest in the relational dimensions of tracking and the potential for intimate surveillance and care using monitoring technologies. Our cases offer not only new perspectives in a field that has often focused on fitness tracking but also help go beyond a narrow focus on surveillance, showing how surveillance and care may be intertwined in the everyday negotiation of health-related tracking and other 'health practices' in family life. Using the diversity in our relatively large sample, and reflecting on the different types of interview completed, we highlight the varied ways in which adults engage with tracking blood pressure and weight (or body mass index) in the context of established relationships. The combination of attentiveness and appeals to responsibility for maintaining health as something owed to a partner can make tracking a very ethically sensitive area. In this paper we emphasise that reciprocity is one important way in which couples make tracking feel more like care. Tracking together or discussing it can take couples in this direction even if the actual practice remains somewhat difficult. On the other hand, responsiveness to someone else's feelings, including a desire to avoid the topic altogether, or avoid weight as a specific parameter, might all help move towards more caring tracking. We therefore develop a more sustained account of care in relation to tracking than in previous work, and a novel account of tracking as a (potential) care practice between adult partners.