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.
A Community of Practice Knowledge Exchange (CPKE) comprising of practitioners and academics with an interest in complexity theory was formed. The central activity of the CPKE was an agreement that each would develop a case study that integrated complexity theory and challenges in practice. In the first phase, members agreed definitions of core concepts and used them to describe the systems they were working in. Frequent contact was via a virtual learning environment. This activity was supplemented with face-to-face contact, in the form of half-day workshops. After several months, the CPKE agreed two core pieces of reading to provide a theoretical basis. These were popular because of their applied focus. The CPKE evolved to a second phase. Diverse case studies of practice-based challenges were used to share experiences of complex systems. A key event was the presentation of case studies as complex systems using a shared conceptual language generated by earlier learning. In the final phase, the CPKE considered interventions into the case studies and created and applied a management toolkit to develop approaches to possible management interventions. Through the development of the toolkit, the CPKE became interested in the role of values in a complexity-based practice and how coherent and shared values could aid more informed interventions. The use of complexity theory changed the ontology of management practice by facilitating an understanding and acceptance of uncertainty and that optimal approaches often required a relational and cooperative approach built on shared values, rather than an instrumental and singular management orthodoxy.
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.
The Brighton Citizen's Health Services Survey (BCHSS) was developed to explore and potentially challenge how knowledge is used and by whom in the production of local health commissioning institutions and relations. Through the creation of an 'animating set of questions', it sought to open up spaces through which to make visible some of the ways of knowing and valuing the NHS and health services that had been minimised through the commensuration practices of post-2012 public engagement. In this way there was a clear agenda to facilitate a form of knowledge democratisation which opened up and validated different 'health publics', in order to explore and broaden participative engagement opportunities. The paper provides an account of the project. It considers the theoretical and methodological underpinnings of this example of 'evidence-based activism', reflects on the impact of the project on local commissioning and considers the range of controversies that arose as a result of the work. It explores the way that research straddling the boundary between academic inquiry and political activism speaks to the many issues that are prevalent in the changing HE sector as well as NHS privatisation, health commissioning and public sector cuts. ; peerReviewed ; publishedVersion
The Brighton Citizen's Health Services Survey (BCHSS) was developed to explore and potentially challenge how knowledge is used and by whom in the production of local health commissioning institutions and relations. Through the creation of an 'animating set of questions', it sought to open up spaces through which to make visible some of the ways of knowing and valuing the NHS and health services that had been minimised through the commensuration practices of post-2012 public engagement. In this way there was a clear agenda to facilitate a form of knowledge democratisation which opened up and validated different 'health publics', in order to explore and broaden participative engagement opportunities. The paper provides an account of the project. It considers the theoretical and methodological underpinnings of this example of 'evidence-based activism', reflects on the impact of the project on local commissioning and considers the range of controversies that arose as a result of the work. It explores the way that research straddling the boundary between academic inquiry and political activism speaks to the many issues that are prevalent in the changing HE sector as well as NHS privatisation, health commissioning and public sector cuts.
The Brighton Citizen's Health Services Survey (BCHSS) was developed to explore and potentially challenge how knowledge is used and by whom in the production of local health commissioning institutions and relations. Through the creation of an 'animating set of questions', it sought to open up spaces through which to make visible some of the ways of knowing and valuing the NHS and health services that had been minimised through the commensuration practices of post-2012 public engagement. In this way there was a clear agenda to facilitate a form of knowledge democratisation which opened up and validated different 'health publics', in order to explore and broaden participative engagement opportunities. The paper provides an account of the project. It considers the theoretical and methodological underpinnings of this example of 'evidence-based activism', reflects on the impact of the project on local commissioning and considers the range of controversies that arose as a result of the work. It explores the way that research straddling the boundary between academic inquiry and political activism speaks to the many issues that are prevalent in the changing HE sector as well as NHS privatisation, health commissioning and public sector cuts.
The Brighton Citizen's Health Services Survey (BCHSS) was developed to explore and potentially challenge how knowledge is used and by whom in the production of local health commissioning institutions and relations. Through the creation of an 'animating set of questions', it sought to open up spaces through which to make visible some of the ways of knowing and valuing the NHS and health services that had been minimised through the commensuration practices of post-2012 public engagement. In this way there was a clear agenda to facilitate a form of knowledge democratisation which opened up and validated different 'health publics', in order to explore and broaden participative engagement opportunities. The paper provides an account of the project. It considers the theoretical and methodological underpinnings of this example of 'evidence-based activism', reflects on the impact of the project on local commissioning and considers the range of controversies that arose as a result of the work. It explores the way that research straddling the boundary between academic inquiry and political activism speaks to the many issues that are prevalent in the changing HE sector as well as NHS privatisation, health commissioning and public sector cuts.
