Harnessing Longitudinal Health Data for Aging Populations: Insights from East and Southeast Asia

Abstract

Background: Longitudinal data are crucial for understanding the rapid population aging in East and Southeast Asia, yet the practical challenges in establishing and managing such data are often undocumented. This study aimed to investigate the challenges and adaptations in data infrastructure establishment, study implementation, long-term maintenance and sustainability, and data utilization practices and mechanisms of data sharing for aging research in this region, with a focus on stakeholder experiences across the full lifecycle of longitudinal aging studies and on generating regionally grounded recommendations for future cohort development. Methods: Qualitative study using semi-structured interviews conducted online and in-person from September 2024 to June 2025. Data were analyzed using a combined inductive, deductive, and abductive approach to identify themes related to the lifecycle of longitudinal aging studies. Stakeholders were engaged across 13 East and Southeast Asia countries/regions, and experts from India, the United Kingdom, and the United States. Purposive and snowball sample of 33 stakeholders involved in aging research data collection and management, including principal investigators, coordinators, and data platform leaders, and other key personnel. with experience establishing or managing aging-related health datasets. Interviews lasted 30–60 minutes, were conducted in Chinese or English according to participant preference, and continued until thematic saturation was reached. The study followed the Consolidated Criteria for Reporting Qualitative Research guidelines, received ethics approval from the Duke Kunshan University Institutional Review Board (Protocol: 2024CW162), and used iterative thematic analysis with independent coding and team-based refinement of themes. Results: Of 33 participants, 72.7% were principal investigators or co-principal investigators. Four key themes emerged: (1) navigating structural and contextual barriers in establishing studies, including funding, collaboration, personnel shortages, and sampling difficulties; (2) adapting research design, instruments, and logistics to local contexts, addressing cultural and linguistic differences, data accuracy, methodological consistency, and biospecimen handling; (3) retaining funding, participants, and personnel for long-term sustainability, considering external disruptions and team turnover; and (4) managing constraints in data governance, privacy, sharing reluctance, and limited data comparability. Participants represented four East Asian and seven Southeast Asian countries/regions, and nearly 40% were female. Across themes, stakeholders emphasized the importance of diversifying funding sources, building multidisciplinary teams, strengthening culturally adapted and quality-controlled data collection procedures, adopting flexible and hybrid follow-up strategies, and developing structured, trust-based data-sharing models to improve access and harmonization. Discussion: Building robust longitudinal aging data ecosystems in East and Southeast Asia requires context-specific strategies to overcome structural barriers, adapt research methodologies, ensure long-term sustainability, and promote effective data sharing. Aligning research with local policies, fostering multidisciplinary collaboration, harmonizing data, and including vulnerable populations are critical for generating impactful evidence to guide healthy aging policies in the region and globally. These findings also offer a practical framework for planning future longitudinal aging studies by highlighting key considerations across study establishment, implementation, maintenance, and data use, with relevance not only to healthy aging research but also to other population health data systems in resource-diverse settings.