Perceived risks and amelioration of harm in research using mobile technology to support antiretroviral therapy adherence in the context of methamphetamine use: a focus group study among minorities living with HIV

Abstract

Background Methamphetamine use poses a barrier to antiretroviral therapy (ART) adherence. Black and Hispanic men who have sex with men living with HIV (PLWH) shoulder much of the health burden resulting from the methamphetamine and HIV syndemic. Smartphones are nearly ubiquitous in the USA and may be promising vehicles for delivering interventions for ART adherence and drug use cessation. However, the acceptability of using applications to collect sensitive information and deliver feedback in this population has not been adequately explored. Objective This study examined minority PLWH’s appraisals of the risks of participating in smartphone-based research to promote ART adherence in the context of methamphetamine use and explored their views on appropriate steps to mitigate perceived risks of participation. Methods Three focus groups were conducted among Black and Hispanic PLWH who use methamphetamine. Of the 13 participants, 5 had previously participated in a smartphone-based observational study of ART adherence and substance use. Discussants provided feedback on smartphone-based research, including receiving probes for HIV medication adherence, mood, and substance use as well as feedback on passive location-tracking for personalized messages. Transcribed audio-recordings were thematically coded and analyzed using the qualitative software MAXQDA. Results Participants expressed confidentiality concerns related to potential unintentional disclosure of their HIV status and methamphetamine use and to possible legal consequences. They additionally expressed concerns around the invasiveness of daily assessments and the potential of methamphetamine use questions to trigger cravings. To mitigate these concerns, they suggested maintaining participant privacy by indirectly asking sensitive questions, focusing on positive behaviors (e.g., number of days sober), allowing user-initiated reporting of location to tailor messages, and ensuring adequate data protections. In addition to financial compensation, participants cited altruism (specifically, continuing a tradition of volunteerism in HIV research) as a motivator for potentially engaging in such research. Conclusions Minority PLWH have concerns regarding the use of smartphones for ART adherence and methamphetamine sobriety intervention research. However, minority PLWH are likely to participate if studies include appropriate protections against risks to confidentiality and experimental harm and are designed to offer future benefit to themselves and other PLWH.

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

“…This approach can be tailored according to personal preferences and the participant's comfort in disclosing health-related information. Furthermore, ensuring data confidentiality through layers of encryption and establishing a secure network connection can prevent remote access to information by potential hackers [52]. Overall, as many of this study's findings apply to mHealth research among MSM, this study may inform the development and implementation of mHealth app-based HIV prevention programs among key populations in Malaysia and other low-and middle-income countries.…”

“…The risk of privacy violations can also be minimized by considering how the data are stored locally on the device or in the cloud or transmitted to the research or clinical team. Apps can be placed in secure vaults on mobile devices or can be entirely password-protected with potential secondary authentication measures (eg, biometrics or personal ID number verification) [27,52].…”

“…Confidentiality concerns related to using an app for HIV prevention, including tracking app-based activity or sharing sensitive personal information (eg, health records or engagement in drug and sexual risk behaviors) disclosed via the app were also reported. Despite these concerns, many participants indicated a willingness to participate, citing improved access to services without interacting with the clinicians in person, receiving personalized reminders, having greater access to information, and having a desire to contribute to a tradition of volunteerism in HIV prevention research [52][53][54]. These perceived benefits are significantly associated with willingness to participate and are particularly relevant in Malaysia.…”

Barriers to and Facilitators of Digital Health Among Culturally and Linguistically Diverse Populations: Qualitative Systematic Review

“…A total of 26% (9/34) of the studies focused on Indigenous or First Nations communities from the United States [32,40,53], Australia [31,56,60], Canada [47,57], and New Zealand [52]. Of the remaining 14 US studies, 3 (21%) were conducted solely in African American communities [35,39,46]; 2 (14%) were conducted among Hispanic or Latino groups only [30,51]; and 6 (43%) were conducted in mixed communities such as Latino, African American, and Euro-American communities [34,36,37,50,55,59]. Of the 17 US studies, 1 (6%) was conducted among Tongan American communities [61], and 2 (12%) were conducted among Korean immigrants or Korean American individuals [45,62].…”

Synergistic Impairment of the Neurovascular Unit by HIV-1 Infection and Methamphetamine Use: Implications for HIV-1-Associated Neurocognitive Disorders

“…The development of new nanoformulations is also creating unique treatment options, offering patients more targeted drug delivery options with lower risks of cytotoxic effects [88,151]. The simplest means of treatment may ultimately prove to be the most effective, as new programs to encourage adherence to existing treatment regimens through text messaging are proving to reduce detrimental behavior, as well as increase rates of adherence to treatment protocols [150,[152][153][154].…”