Investigating Awareness and Acceptance of Digital Phenotyping in Dhaka’s Korail Slum: Qualitative Study

TL;DR

This study explores how residents of a slum in Dhaka, Bangladesh, perceive digital phenotyping for mental health care, finding a need for education, privacy safeguards, and cultural adaptation.

Contribution

The study provides novel insights into awareness, acceptance, and privacy concerns of digital phenotyping in a low-income, urban slum population in a LMIC context.

Findings

Most participants lacked prior knowledge of digital phenotyping but acknowledged its potential after explanation.

Privacy concerns were significant, with fears of data misuse and a need for trust-building measures.

Participants emphasized the importance of adapting DP tools to local cultural and technological contexts.

Abstract

Digital phenotyping (DP), the process of using data from digital devices, such as smartphones and wearable technology to understand and monitor people’s behavior, health, and daily activities, has shown significant promise in mental health care within high-income countries. However, its application in low- and middle-income countries (LMICs) is limited, particularly among impoverished populations such as slum residents.

This study investigates the awareness, knowledge, acceptance, and implementation of DP, including willingness to share data, and concerns regarding privacy and data security, among residents of Dhaka’s Korail slum, one of Bangladesh’s largest and most densely populated informal settlements. Understanding awareness, acceptance, and privacy concerns surrounding DP in these settings is critical for its effective implementation.

We conducted 8 focus group discussions with 79% (30/38) of female participants (mean age 37, SD 13.7 years). Participants included 20 individuals diagnosed with serious mental disorders and 18 caregivers. The focus group discussions also included a section explaining what DP is.

Smartphone ownership was reported by 45% (17/38) of the participants, while 92% (35/38) of the participants had access to a smartphone through family members. There was a general lack of awareness about DP among the participants. Initially, 92% (35/38) of participants had no prior knowledge of DP, but after receiving an explanation, they acknowledged its potential applications and benefits. Participants recognized the use of DP for health monitoring, particularly in managing mental health conditions. Participants expressed willingness to share certain types of data, particularly phone usage and location data, provided that content-level information remained private. Despite these perceived benefits, significant concerns about privacy and data security emerged. Participants expressed fears about the potential misuse of their personal information, with some feeling resigned to the idea of already being constantly monitored. Trust in DP tools emerged as a critical factor for adoption, highlighting the need for transparent data protection policies and user control over data sharing. Additionally, participants emphasized the importance of adapting DP tools to local contexts, including cultural considerations and technological literacy.

While DP presents a promising avenue for mental health support in underserved urban populations, its adoption in LMIC slum settings requires targeted educational initiatives, robust privacy safeguards, and community involvement to ensure trust and usability. DP tools should be adapted to fit the cultural context of the target population, possibly involving modifications to the types of data collected or the way data are interpreted. While DP holds potential to improve mental health care in underserved communities, addressing barriers related to awareness, privacy, culture, and usability is crucial. Focusing on educational initiatives, robust data protection, cultural adaptation, user-friendly design, and community engagement, DP can become a valuable tool in bridging the mental health care gap in LMICs.

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