Development of an mHealth platform for HIV Care: Gathering User Perspectives Through Co-Design Workshops and Interviews

Abstract

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.

Digitized HIV/AIDS Treatment Adherence Interventions: A Review of Recent SMS/Texting Mobile Health Applications and Implications for Theory and Practice

“…Other reviews (i.e., Purnomo et al, 2018), reported similar findings, as well. In Europe, for example, PLWH expressed that the even healthcare providers lacked knowledge about HIV (Marent et al, 2018b). Of note, providers in that same study also expressed their concerns regarding technology security features (Marent et al, 2018a).…”

“…Yè et al's (2018) MOS@N intervention consisted of five training modules delivered to community workers on how to engage patients in care. MOS@N featured interactive voice Personal Privacy, Data Privacy, Confidentiality: Some participants expressed they did not trust the security of cloud-based systems and fear these are a threat to the security of their information and data (Marent et al, 2018b) 3. Hightow-Weidman et al 2018No: Not addressed for the study to optimize engagement in care 2019Yes: app delivery language was English and Zulu, lab values were color-coded to easy distinguish abnormal values, and the app language was "simple"…”

Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIV

“…BeYou+, is a mobile phone app [5] that allows users to track their laboratory results, medication, and appointments. Finally, the EmERGE project seeks to develop an mHealth platform to facilitate self-management and communication between those living with HIV and their healthcare team [46].…”

“…A large proportion of the research in Computer-Supported Collaborative Work (CSCW) and Human-Computer Interaction (HCI) has focused on the informational, emotional and social support provided through online forums and social networking sites, in which people living with a condition can share their experiences and expertise with their peers [16,23,[27][28][29]44,49,50,56,70]. This focus on mutual support amongst peers is also mirrored in research focusing on people with HIV, which has shown that people with HIV look for information and advice about their health from a variety of sources, including newsletters, magazines, personal physicians, and friends [26,[46][47][48]62,63,66].…”

Developments in Privacy and Data Ownership in Mobile Health Technologies, 2016-2019

“…Still other authors noted this dichotomy within their reported results with some participants expressing significant privacy concerns and others stating it to not be an issue [146,147]. While some users expressed such concerns related to collection of highly sensitive-data, such as that related to behavioral health, reproductive health, or HIV status [135,[148][149][150][151], other users who provided such data still reported little unease related to their privacy [139,142,[152][153][154]].…”