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.
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.
Lay participation in health care decision making lacks an adequate analysis from an organizational perspective. This article aims to develop conceptual devices to analyze policies and practices and the ways in which these could be further developed. By recapping established frameworks and drawing on theories of professional organizations, four participatory roles and their potential to adapt organizational decisions to internal requirements and external challenges are elaborated. While individual patient participation is widely acknowledged, there is still a lack of systematic approaches to the roles of significant others, patient groups, and the broader community and their implementation within health care organizations.
