BackgroundDespite 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.ObjectiveThe 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.MethodsBetween 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.ResultsFindings 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.ConclusionsOur 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.
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.
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.
Published in: Evaluation and Program Planning, 40 (2013) [42][43][44][45][46][47][48][49][50][51][52][53][54] A B S T R A C T Participatory evaluation has been increasingly used in health promotion (HP) and various forms of participatory evaluation have been put into practice. Simultaneously, the concept of participation has become more important for evaluation research in general, which is equally diverse and the subject of various discourses. This study addresses the issue of how the concept of participation has been established in HP evaluation practice. An analytical framework was developed, which served as a basis for a literature review, but can also be used as a general framework for analyzing and planning the scope of participation by various stakeholders within different phases of participatory evaluation. Three dimensions of participation, which refer to decision making (decision power, deliberation) and action processes are distinguished. The results show that only a few articles discussed participatory evaluation processes and participatory (evaluation) research was largely put forth by participatory (action) research in communities. The articles analyzed referred mostly to three stakeholder groups -evaluators, program staff and beneficiaries -and to participation processes in the initial evaluation phases. The application of the framework revealed that decision power seems to be held predominantly by program staff, evaluators seem to be more involved in action processes and beneficiaries in deliberation processes.
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.
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