OBJECTIVES: Advances in technology allow real-time data collection from patients without disrupting their daily routines, and without burdensome clinic visits. This shift can help build patient-centric research programs that engage participants in a meaningful, lasting way. This research aimed to investigate technology considerations and other components of real world study design which encourage patient engagement and retention.

METHODS: Literature between 2019-2023 was reviewed for engagement tactics in technology-led real world studies. Three 90-minute focus groups were conducted, splitting participants by age (18-35,35-55,55+). Participants, who were compensated $100, were asked for their opinions on utilizing a mobile app to support their engagement and participation in real-world studies.

RESULTS: Responses from 25 focus group participants were compared to 11 manuscripts to understand the most important participant engagement tactics in technology-led real-world studies. Results highlighted three main categories that influence engagement: usability of technology, support received throughout study participation, and incentives for study participation.

CONCLUSIONS: As real-world studies increase in their role to provide evidence for decision-making, often requiring long-term follow-up, there is a high level of burden on both participants and research sites that can result in engagement and retention challenges. Digital technologies—telehealth, electronic consent, mobile/web apps, and wearables—allow participation in real world studies with minimal or no site visits (beyond routine care). Our research highlighted the importance of the participant voice to inform real world study design and determine the appropriate technology to implement to ensure long term engagement. To enhance engagement in technology-led real world studies, design should prioritize usability, provide clear virtual support pathways, consider age-related nuances, individual motivating factors and appropriately give incentives, whether through monetary reimbursement, educational materials or personal data insights. Future research will explore the impact of these different engagement tactics through additional focus groups, across different study types, characteristics and participant populations.