Privacy and Confidentiality Concerns Related to the Use of mHealth Apps for HIV Prevention Efforts Among Malaysian Men Who Have Sex With Men: Cross-sectional Survey Study

Abstract

Background The use of mobile health (mHealth), including smartphone apps, can improve the HIV prevention cascade for key populations such as men who have sex with men (MSM). In Malaysia, where stigma and discrimination toward MSM are high, the mHealth platform has the potential to open new frontiers for HIV prevention efforts. However, little guidance is available to inform researchers about privacy and confidentiality concerns unique to the development and implementation of app-based HIV prevention programs. Objective Given the lack of empirical data in this area, we aim to understand the privacy and confidentiality concerns associated with participation in a hypothetical app-based research study for HIV prevention efforts. Methods A cross-sectional, web-based survey was conducted between June and July 2020 among 355 Malaysian MSM. The survey included demographic and sexual health questions and a series of short videos describing a hypothetical app-based HIV prevention program, followed by questions related to privacy and confidentiality concerns in each step of the app-based program (ie, recruitment, clinical interaction, risk assessment, and weekly reminder). Multivariable logistic regression models were used to identify the correlates of willingness to use such an app-based program. Results Most of the participants (266/355, 74.9%) indicated their willingness to participate in a hypothetical mHealth app–based HIV prevention program. Participants expressed concerns about privacy, confidentiality, data security, and risks and benefits of participating in all stages of the app-based HIV research process. Multivariate analyses indicated that participants who had a higher degree of perceived participation benefits (adjusted odds ratio [aOR] 1.873; 95% CI 1.274-2.755; P=.001) were more willing to participate. In contrast, participants who had increased concerns about app-based clinical interaction and e-prescription (aOR 0.610; 95% CI 0.445-0.838; P=.002) and those who had a higher degree of perceived risks of participating (aOR 0.731; 95% CI 0.594-0.899; P=.003) were less willing to participate. Conclusions Overall, our results indicate that mHealth app–based HIV prevention programs are acceptable for future research on Malaysian MSM. The findings further highlighted the role of privacy and confidentiality, as well as the associated risks and benefits associated with participation in such a program. Given the ever-evolving nature of such technological platforms and the complex ethical–legal landscape, such platforms must be safe and secure to ensure widespread public trust and uptake.

Ethical Issues in the Use of Smartphone Apps for HIV Prevention in Malaysia: Focus Group Study With Men Who Have Sex With Men

“…Among our sample of MSM, concerns about privacy and confidentiality were substantial, bringing forth the issue of third-party data interception, which can occur by accidental disclosure or deliberately through governmental access and subpoena. This finding accentuates previously reported concerns among MSM subgroups regarding the unintentional disclosure of sensitive information to nearby users [ 31 ] and further highlights the need for app developers to incorporate app features that address the privacy and confidentiality concerns. Other MSM subgroups have also emphasized their fear of being inadvertently “outed” within their respective communities if they use such platforms in public [ 50 ].…”

“…mHealth platforms are well placed to fill this gap, as they provide a web-based platform to deliver HIV services, especially in countries such as Malaysia where MSM are well connected to the internet and use smartphones to seek sexual health information on the web [ 29 ]. The findings of this study are critical to assist the development of ethically sound app-based HIV prevention programs, which require the engagement of MSM early on [ 31 ].…”

“…Existing data indicate that over 97% of MSM in Malaysia have access to a smartphone, making mHealth a highly feasible platform for this subpopulation [29]. Furthermore, findings from recent studies demonstrate a strong preference among MSM for smartphone apps over other modalities (eg, text, phone calls, and emails) to engage in mHealth HIV prevention tools, thus supporting the development and deployment of smartphone apps for HIV prevention [29][30][31]. mHealth could serve as an innovative platform to improve access to and use of HIV testing, linkage to PrEP and antiretroviral therapy, and other support services (eg, mental health and substance use).…”

“…Although ethical considerations for telehealth have been well addressed in the literature, particularly in high-income countries [ 35 , 36 ], patient feedback on ethical issues around using smartphone apps for HIV prevention is sparse, especially in low- and middle-income countries such as Malaysia [ 31 ]. Therefore, this study aims to fill this gap by characterizing the attitudes and concerns of Malaysian MSM regarding HIV prevention mobile apps, particularly regarding the ethical aspects surrounding their use.…”

Interviews with HIV Experts for Development of a Mobile Health Application in HIV Care—A Qualitative Study

“…However, concerns about data privacy, e.g., when the app emits warning messages, constitute a characteristic both groups have in common. This is similar to other studies which have already shown that people living with HIV have a high level of awareness regarding the privacy and security of their health data [51,52]. The design and implementation of the app must ensure that patients using the app in their daily lives cannot be identified by other people as HIV-infected individuals or PrEP users.…”