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.

"It's changed my life not to have the continual worry of being warm" - health and wellbeing impacts of a local fuel poverty programme: a mixed-methods evaluation.

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.

"I have the strength to get through this using my past experiences with HIV": findings from a mixed-method survey of health outcomes, service accessibility, and psychosocial wellbeing among people living with HIV during the Covid-19 pandemic.

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.

Understanding the Value of Patientview for Enabling Self-Care Practice in Chronic Kidney Disease.

BACKGROUND: Individual responsibility and self-care are seen as ways to overcome some of the challenges for long-term health care provision. Patients are being encouraged to take an active role in their health care. Access to health information via a web-based, patient-facing portal is an innovative way to engage in self-care. PatientView is one such portal, which was developed to allow patients with kidney disease access to parts of their health record. It was thought that the use of PatientView would improve self-care activity but there was little evidence to support this claim. OBJECTIVE: To gain an understanding of how patients with kidney disease use PatientView in their self-care practice. PARTICIPANTS: Six users and four non-users of PatientView. DESIGN: Qualitative, semi-structured interviews and participant observation. APPROACH: A practice-based approach was used to collect qualitative data to better understand how patients use PatientView in daily life to enable self-care. Participants were invited to "show the researcher" how they use PatientView and to describe how they translated the information into actions of self-care. Inductive analysis was used to identify themes. RESULTS: The analysis identified four key themes, which were non-linear inter-related. Patients engage with PatientView because it supports ways of knowing that are of direct importance to self-care activity. Patients interact with PatientView and translate the information they gain from using it into actions that support self-care. A consequence of engaging with PatientView is that patients can involve their family more in their care and this helps to reduce the burden on health care professionals. CONCLUSION: Patient interactions with PatientView are inter-related, multi-dimensional and differ according to the individual's positioning within a continuum of care. Nonetheless, these interactions can be captured and doing so provides a basis for understanding of how patients create and sustain opportunities for care through information technology.

Barriers to HIV care and adherence for young people living with HIV in Zambia and mHealth.

BACKGROUND: The control of HIV/AIDS has been a contemporary public health success story however, whilst infection rates are falling and people are living longer due to antiretroviral therapy, adolescents and young people remain disproportionally affected. Infection rates and AIDS-related deaths continue to increase in these age groups in some areas globally. This has been primarily attributed to structural barriers including HIV-services not being youth friendly with opening hours conflicting with school time, fears around unintended disclosure and confidentiality, and the attitudes of healthcare professionals-but research targeting these specific age groups remains limited. Early mHealth (i.e., the use of mobile and wireless devices to assist in achieving health objectives) projects have been shown to improve health outcomes in other disease areas and health settings however, amongst people living with HIV, current research is limited. The aim of this study was to explore barriers to HIV care and the acceptability and feasibility of using mHealth to improve retention into care and ART adherence for young people living with HIV (16-24 years old) in Lusaka, Zambia. METHODS: Qualitative in-depth interviews and focus group discussions were carried out in four CIDRZ-supported health facilities in Lusaka, Zambia. Six interviews were carried out with nurses and peer-support workers working with young people living with HIV and three focus groups with a total of 24 young people. Recruitment was via purposive sampling. Interviews and focus groups were recorded, translated and transcribed and entered into NVivo for thematic analysis. RESULTS: Twenty-four of the young persons interviewed had access to mobile phones and reported using them for social networking, information gathering and regular communication. Barriers to HIV care and adherence were largely underpinned by stigma. Participants described healthcare facilities as not being conducive for confidentiality and therefore were reluctant to be seen attending or collecting medication from the pharmacy due to possible unintended disclosure and consequential HIV-related stigma. Clinic opening and waiting times and experiences with healthcare professionals also served as barriers. It was felt unanimously by participants that mHealth would be beneficial in improving retention into care and ART adherence in young people living with HIV. CONCLUSIONS: HIV-related stigma remains a barrier to care. With growing access to mobile phones and internet, and a growing population of adolescents who are already using their phones to support each other and seek information, mHealth appears to be both a feasible and acceptable tool to support retention, provide young people with information, and potentially reduce time spent at health facilities via appointment reminders and electronic drug refill requests.

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.

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.