Technology and Human Support Systems in Decentralized Studies: A Participant-Centered Case Study in Cystic Fibrosis

As the integration of informatics into clinical research reshapes the landscape of decentralized studies, optimizing participant experience remains a key challenge. Although prior research has established foundations for decentralized study design, a more comprehensive understanding of participant perspectives is essential to ensure remote methods for data collection meet participant needs. This study contributes to a growing literature in participant-centered decentralized studies through an analysis of OUTREACH, a 3-month home spirometry study among individuals with cystic fibrosis. Through a qualitative analysis of 46 participant exit interviews, we identified three overarching categories that influenced participant experience: motivators, technological infrastructure, and human coordination. Our findings emphasize the value of reliable technology and comprehensive interpersonal support systems. These findings shed light upon the importance of sociotechnical elements for optimizing participant experience, which may enhance the quality of clinical study data through meaningful participant engagement.