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.

Understanding digital health: Productive tensions at the intersection of sociology of health and science and technology studies.

In this editorial introduction, we explore how digital health is being explored at the intersection of sociology of health and science and technology studies (STS). We suggest that socio-material approaches and practice theories provide a shared space within which productive tensions between sociology of health and STS can continue. These tensions emerge around the long-standing challenges of avoiding technological determinism while maintaining a clear focus on the materiality and agency of technologies and recognising enduring sets of relations that emerge in new digital health practices while avoiding social determinism. The papers in this Special Issue explore diverse fields of healthcare (e.g. reproductive health, primary care, diabetes management, mental health) within which heterogenous technologies (e.g. health apps, mobile platforms, smart textiles, time-lapse imaging) are becoming increasingly embedded. By synthesising the main arguments and contributions in each paper, we elaborate on four key dimensions within which digital technologies create ambivalence and (re)configure health practices. First, promissory digital health highlights contradictory virtues within discourses that configure digital health. Second, (re)configuring knowledge outlines ambivalences of navigating new information environments and handling quantified data. Third, (re)configuring connectivity explores the relationships that evolve through digital networks. Fourth, (re)configuring control explores how new forms of power are inscribed and handled within algorithmic decision-making in health. We argue that these dimensions offer fruitful perspectives along which digital health can be explored across a range of technologies and health practices. We conclude by highlighting applications, methods and dimensions of digital health that require further research.

Development of an mHealth platform for HIV Care: Gathering User Perspectives Through Co-Design Workshops and Interviews.

BACKGROUND: Despite advances in testing and treatment, HIV incidence rates within European countries are at best stable or else increasing. mHealth technology has been advocated to increase quality and cost-effectiveness of health services while dealing with growing patient numbers. However, studies suggested that mHealth apps are rarely adopted and often considered to be of low quality by users. Only a few studies (conducted in the United States) have involved people living with HIV (PLWH) in the design of mHealth. OBJECTIVE: The goal of this study was to facilitate a co-design process among PLWH and clinicians across 5 clinical sites in the European Union to inform the development of an mHealth platform to be integrated into clinical care pathways. We aimed to (1) elicit experiences of living with HIV and of working in HIV care, (2) identify mHealth functionalities that are considered useful for HIV care, and (3) identify potential benefits as well as concerns about mHealth. METHODS: Between January and June 2016, 14 co-design workshops and 22 semistructured interviews were conducted, involving 97 PLWH and 63 clinicians. Data were analyzed thematically and iteratively, drawing on grounded theory techniques. RESULTS: Findings were established into 3 thematic clusters: (1) approaching the mHealth platform, (2) imagining the mHealth platform, and (3) anticipating the mHealth platform's implications. Co-design participants approached the mHealth platform with pre-existing concerns arising from their experiences of receiving or providing care. PLWH particularly addressed issues of stigma and questioned how mHealth could enable them to manage their HIV. Clinicians problematized the compatibility of mHealth with existing information technology systems and questioned which patients should be targeted by mHealth. Imagining the potential of mHealth for HIV care, co-design participants suggested medical functionalities (accessing test results, managing medicines and appointments, and digital communication channels), social functionalities (peer support network, international travel, etc), and general features (security and privacy, credibility, language, etc). Co-design participants also anticipated potential implications of mHealth for self-management and the provision of care. CONCLUSIONS: Our approach to co-design enabled us to facilitate early engagement in the mHealth platform, enabling patient and clinician feedback to become embedded in the development process at a preprototype phase. Although the technologies in question were not yet present, understanding how users approach, imagine, and anticipate technology formed an important source of knowledge and proved highly significant within the technology design and development process.

Ambivalence in digital health: Co-designing an mHealth platform for HIV care.

In reaction to polarised views on the benefits or drawbacks of digital health, the notion of 'ambivalence' has recently been proposed as a means to grasp the nuances and complexities at play when digital technologies are embedded within practices of care. This article responds to this proposal by demonstrating how ambivalence can work as a reflexive approach to evaluate the potential implications of digital health. We first outline current theoretical advances in sociology and organisation science and define ambivalence as a relational and multidimensional concept that can increase reflexivity within innovation processes. We then introduce our empirical case and highlight how we engaged with the HIV community to facilitate a co-design space where 97 patients (across five European clinical sites: Antwerp, Barcelona, Brighton, Lisbon, Zagreb) were encouraged to lay out their approaches, imaginations and anticipations towards a prospective mHealth platform for HIV care. Our analysis shows how patients navigated ambivalence within three dimensions of digital health: quantification, connectivity and instantaneity. We provide examples of how potential tensions arising through remote access to quantified data, new connections with care providers or instant health alerts were distinctly approached alongside embodied conditions (e.g. undetectable viral load) and embedded socio-material environments (such as stigma or unemployment). We conclude that ambivalence can counterbalance fatalistic and optimistic accounts of technology and can support social scientists in taking-up their critical role within the configuration of digital health interventions.

Information and care: A relational approach.

This article explores how the provision of information about dementia impacts on carers and the caring relationships in which they are involved. Narrative interviews were undertaken with 25 carers who had undertaken the Alzheimer's Society - run Carer Information and Support Programme in one of seven sites across London and the South East. Thematic analysis identified two major themes relating to the impact of information on carer and caring relationships ('understanding and care' and 'emotional impact of information'), and another theme relating to the context within which the information was provided and shared ('relational practices in information-giving and receiving'). Findings suggest that while information, particularly in the form of new knowledge about how dementia progresses, helps to improve understanding and increase confidence, competence and a sense of security and achievement in caring practices, it can also confound and complicate caring practices in ways that reflect and reinforce previously difficult relationships. Providing information in the context of carers' support was important for most participants but others were less able to benefit from this, especially where they felt unrecognised or where the timing of information felt inappropriate to their needs. Our analysis complements and extends previous scholarship emphasising the relational nature of care by showing how information can both enhance and complicate care relationships, depending on both specific care contexts and on how carers experience the context of information provision.

To see or not to see: a qualitative interview study of patients' views on their own diagnostic images.

OBJECTIVES: To ascertain what meaning individuals attach to perceiving images of their own interior body and how the images and their meanings affect the clinical consultation. DESIGN: Face-to-face semistructured interviews. PARTICIPANTS: 25 adult patients in southern England who, within the preceding 12 months, had been referred for diagnostic imaging. SETTING: Community. RESULTS: For patients, being shown their own X-rays, MRIs or CT images creates a variety of effects: (1) a sense of better understanding of the diagnosis; (2) validation of their sensory and emotional response to the illness or injury and (3) an alteration to the tenor and nature of the clinical encounter between patient and physician. In addition to meanings attached to these images, patients also impute meaning to the physician's decision not to share an image with them. The desire to see their image was greater in those patients with a skeletal injury; patients are less keen on viewing abdominal or other soft tissue images. CONCLUSIONS: Viewing images of one's interior, invisible body is powerful and resonant in a number of ways. The experience of not seeing, whether through the patient's or the physician's choice, is also fraught with meaning.

Practice-centred evaluation and the privileging of care in health information technology evaluation.

UNLABELLED: Our contribution, drawn from our experience of the case study provided, is a protocol for practice-centred, participative evaluation of technology in the clinical setting that privileges care. In this context 'practice-centred' evaluation acts as a scalable, coordinating framework for evaluation that recognises health information technology supported care as an achievement that is contingent and ongoing. We argue that if complex programmes of technology-enabled service innovation are understood in terms of their contribution to patient care and supported by participative, capability-building evaluation methodologies, conditions are created for practitioners and patients to realise the potential of technologies and make substantive contributions to the evidence base underpinning health innovation programmes. BACKGROUND: Electronic Patient Records (EPRs) and telemedicine are positioned by policymakers as health information technologies that are integral to achieving improved clinical outcomes and efficiency savings. However, evaluating the extent to which these aims are met poses distinct evaluation challenges, particularly where clinical and cost outcomes form the sole focus of evaluation design. We propose that a practice-centred approach to evaluation - in which those whose day-to-day care practice is altered (or not) by the introduction of new technologies are placed at the centre of evaluation efforts - can complement and in some instances offer advantages over, outcome-centric evaluation models. METHODS: We carried out a regional programme of innovation in renal services where a participative approach was taken to the introduction of new technologies, including: a regional EPR system and a system to support video clinics. An 'action learning' approach was taken to procurement, pre-implementation planning, implementation, ongoing development and evaluation. Participants included clinicians, technology specialists, patients and external academic researchers. Whilst undergoing these activities we asked: how can a practice-centred approach be embedded into evaluation of health information technologies? DISCUSSION: Organising EPR and telemedicine evaluation around predetermined outcome measures alone can be impractical given the complex and contingent nature of such projects. It also limits the extent to which unforeseen outcomes and new capabilities are recognised. Such evaluations often fail to improve understanding of 'when' and 'under what conditions' technology-enabled service improvements are realised, and crucially, how such innovation improves care. SUMMARY: Our contribution, drawn from our experience of the case study provided, is a protocol for practice-centred, participative evaluation of technology in the clinical setting that privileges care. In this context 'practice-centred' evaluation acts as a scalable, coordinating framework for evaluation that recognises health information technology supported care as an achievement that is contingent and ongoing. We argue that if complex programmes of technology-enabled service innovation are understood in terms of their contribution to patient care and supported by participative, capability-building evaluation methodologies, conditions are created for practitioners and patients to realise the potential of technologies and make substantive contributions to the evidence base underpinning health innovation programmes.

Rhetorics of health citizenship: exploring vernacular critiques of government's role in supporting healthy living.

This article explores how older adults negotiate and partially counter normative expectations of "health citizenship" that stress individual responsibility for maintaining health and preventing health problems. Based on interviews with 55 participants in Canada and the U.K. about what healthy living means to them in their everyday lives, we examine how the dominant discourse of personal responsibility in participants' responses is counterpointed by a more muted, yet significant, alternative critical perspective on the relative roles and responsibilities of government and citizens in making healthy living possible. Drawing on Hauser's (1999) concept of vernacular rhetoric along with recent theories of environmental citizenship, we analyze how participants exercise their civic-political judgment by using a logic of dissociation to argue that what government says about the importance of healthy living is incompatible with what government does to support citizens' abilities to eat healthily and live actively. By deploying this technique of argumentation to address structural-political-economic dimensions of healthy living, participants enact, in modest ways, an alternative, critical-collective mode of health citizenship that complicates and, at least partially, disrupts neoliberal constructions of the individually responsible, "good" health citizen.

The moralization of healthy living: Burke's rhetoric of rebirth and older adults' accounts of healthy eating.

This article develops a rhetorical analysis of how older adults in Canada and the UK engage with civic-moral imperatives of healthy living. The analysis draws on Burke's concepts of 'symbolic hierarchies' and the 'rhetoric of rebirth' to explore how participants discursively negotiate the moralizing framework of self-regulation and self-improvement central to healthy eating discourse, in particular. Working from the premise that healthy eating is a 'principle of perfection' that citizens are encouraged to strive to achieve, the article traces the vocabularies and logical distinctions of 'guilt', 'purification' and 'redemption' in participants' accounts of what healthy eating means to them. This analysis reveals some of the complex, situated and often strategic ways in which they rearticulate and reconfigure the normative imperatives of healthy eating in ways suited to their lived experience and their priorities for health and well-being in older age.

Informing health? Negotiating the logics of choice and care in everyday practices of 'healthy living'.

This paper reports on a qualitative study examining everyday practices of healthy living (HL). Forty-four semi-structured interviews were undertaken with Canadian and UK citizens, aged 45 - 70, in April-May 2010. The research sits within the now substantial literature concerned with how health information is mediated, both by people and technologies, and employed in the context of 'good' health citizenship. Throughout this work, notions of 'choice' and 'empowerment' have been interrogated, theoretically and empirically, to reveal both the knowledge/power relationships integral to 'informing' processes and the shifting relationship between information and care in contemporary health encounters. In this paper, we analyse how people make sense of what it means to live healthily and how they know if they are doing so by focussing on three ways in which study participants become informed about healthy living: through their engagement with universal HL messages, through their own information searches, and through their attempts to measure their 'healthiness'. Following Mol's (2008) critique of the "logic of choice" in contemporary healthcare, we understand healthy living as a "situation of choice" where complex problems are framed as simple matters of choice and where information and technologies are understood as neutral aids to decision-making in support of 'correct' choices. Our analysis builds on and extends Mol's work by exploring how participants negotiate between this "logic of choice" and her alternative "logic of care" in their accounts of everyday HL informing practices and how the two logics "interfere" with one another. These accounts show resistance to the logic of choice through 'calls for care' but they also show clearly how the disciplining logic of choice works to (re)present such calls for care as failed attempts at healthy living, undermining the very practices the logic of choice seeks to encourage.

Double vision: an exploration of radiologists' and general practitioners' views on using picture archiving and communication systems (PACS).

This article explores the perspectives of two user groups, general practitioners (GPs) and consultant radiologists (CRs), on the rollout of picture archiving and communications systems (PACS) within acute trusts and eventually to primary care as part of the electronic patient record. Qualitative interviews were conducted with 16 CRs and 31 GPs. Analysis was carried out using a grounded theory approach. Radiologists expressed positive views about the implementation of PACS in secondary care, but were wary of GPs accessing radiological images. GPs expressed concerns about the added burdens that PACS might bring to primary care, but most felt that sharing images with patients could benefit doctor-patient communication and increase patient satisfaction. This study highlights both impediments and pathways to the implementation of PACS in primary care, and illustrates the importance of regarding PACS as socially embedded and users as culturally disparate.