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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. [ABSTRACT FROM AUTHOR]

In this paper we present empirical work detailing the engagement practices of a large FLOSS project, the Digital Business Ecosystem (DBE). In common with many other FLOSS projects, the DBE project focused on the development of infrastructural software components. Infrastructures and FLOSS software exhibit multiplicity: as objects they both change and stay the same. Whilst the implications of multiplicity with respect to infrastructure have been well-documented, with respect to FLOSS, they remain under-explored. Through examining how the DBE engaged new participants we were able to explore the nature of the FLOSS software object by asking the implied question: engagement with what? We draw on recent analysis by Law and Singleton to show how the innovative yet non-existent potentiality of the DBE was as signifi cant to engagement as its steadily growing codebase. We argue that acknowledging the materiality and immateriality of the FLOSS software object has important consequences for management of, and engagement with, FLOSS projects. [ABSTRACT FROM AUTHOR]

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. • Demonstrates how participation has been troubled along three key dimensions. • Develops the lens of care framework to reflect and evaluate participatory processes. • Elaborates the codesign process to develop a digital health platform for HIV care. • Analyses the selection of actors and knowledges within participatory spaces. • Guides researchers to take responsibility for the worlds they co-construct. [ABSTRACT FROM AUTHOR]

Abstract 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. Highlights • Proposes 'ambivalence' as a critical and engaged approach to digital health. • Reports on a co-design process engaging 97 HIV patients in 5 clinics across the EU. • Highlights how patients approach the use of a prospective mHealth platform. • Ambivalence configured in 3 dimensions: quantification, connectivity, instantaneity. • Ambivalence was navigated alongside embodied conditions and embedded practices. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

We examined the impact of Covid-19 restrictions on the wellbeing and access to care among people living with HIV (PLWH) in the UK. A cross-sectional anonymous online survey was circulated to PLWH attending care at three HIV services in Sussex. The questionnaire covered key themes: socio-demographic characteristics; changes in physical and mental health; accessibility of essential health services and information; and socio-economic concerns. Free-text qualitative responses were examined through framework analysis. Quantitative data from 653 respondents were available, with a subset of 385 free-text qualitative responses. In terms of mental health, 501 (77.6%) respondents reported feeling more anxious; 464 (71.8%) reported feeling more depressed than usual; and 128 (19.8%) reported having suicidal thoughts since the start of the pandemic. Respondents worried about running out of HIV medicine (n = 264, 40.7%); accessing HIV services (n = 246, 38.0%) as well as other health services (n = 408, 63.0%). Widespread resilience was also noted: 537 (83.3%) of respondents felt that living with HIV had equipped them with the strength to adapt to the Covid-19 pandemic. Findings highlight important gaps between the multifaceted needs of PLWH. Multisectoral collaborations and investments are needed to adequately support PLWH and to build resilience to future shocks within HIV services. [ABSTRACT FROM AUTHOR]

Background: Living in a cold home and being fuel poor can contribute to adverse physical and mental health. Energy efficiency interventions are considered the simplest ways of tackling fuel poverty and preventing associated negative health, wellbeing, and socio-economic consequences. The overall aim of the current study was to provide a greater understanding of the impact of a locally administered programme, which funded the installation of major heating/insulation measures in areas of high fuel poverty, on the health and wellbeing of beneficiaries of the programme.Methods: A mixed-methods approach to explore the health and wellbeing impacts of a fuel poverty programme in East Sussex that took place between October 2016 and March 2018. Beneficiaries completed the Warwick-Edinburgh Mental Wellbeing Scale before and after any heating/insulation work had been completed in their home. Beneficiaries were also asked to retrospectively rate their health pre- and post-installation. Interviews with 23 beneficiaries of the programme were conducted to explore in-depth the impact of the programme on people's health and wellbeing and the wider social determinants of health.Results: A major heating/insulation measure was installed in 149 homes. The majority of measures installed were boilers (57.7%) and new central heating systems (32.2%). Self-rated health and wellbeing were significantly higher post-installation. Interviewees described clear examples of the positive impacts on physical health and wellbeing such as fewer chest infections, reduced pain, feeling less anxious and depressed, and generally feeling happier and more relaxed. Interviews also highlighted broader areas of impact such as reduced social isolation and increased use of domestic space. Many of the beneficiaries also reported a reduction in their energy bills since their new heating systems had been installed.Conclusions: The findings from the evaluation suggest that the installation of major heating or insulation measures such as new boilers have substantial benefits for the health and wellbeing of beneficiaries. The findings also suggest that the programme had a positive impact on wider determinants of health including reduction in stress and isolation that are likely to be part of the pathways between fuel poverty interventions and mental and physical health outcomes. [ABSTRACT FROM AUTHOR]