Reflecting on lived experience expertise in digital mental health research

Abstract

Lived experience draws on unique insights gained from personal encounters with mental health challenges, irrespective of formal diagnoses. In this Viewpoint, we outline the important contribution of lived experience in digital mental health research in shaping research priorities and the design and delivery of digital mental health interventions and also examine ethical considerations involved. Although digital health technologies are frequently developed by researchers and industry experts, lived experience experts bring in an important voice to address issues such as usability, data privacy, and accessibility of digital tools in daily life. We draw on two case examples-the Wellcome Trust-funded Contributions of Social Networks to Community Thriving (CONNECT) study and the Wellcome Data Prize-that show how engaging lived experience experts can enhance recruitment, design, and equitable participation. We further recommend improved data governance, digital accessibility measures, capacity-building initiatives, and a global commitment to meaningful engagement to ensure that digital mental health research genuinely reflects and benefits the communities it intends to serve.