Skip to main content

Lund University Publications

LUND UNIVERSITY LIBRARIES

Harnessing Longitudinal Health Data for Aging Populations

Tang, Shuhan ; Gong, Enying ; Xu, Wenqian LU orcid ; Zhou, Kaixin ; Lee, Yunhwan ; Shobugawa, Yugo ; J. Brunner, Eric ; Myagmarjav, Sugarmaa ; Tan, Maw Pin and Woo, Jean , et al. (2026) In JAMA Network Open 9(4). p.1-14
Abstract
Importance Longitudinal data are crucial for understanding rapid population aging in East and Southeast Asia, yet challenges in establishing and managing infrastructures remain undocumented.

Objective To investigate challenges and adaptations across longitudinal aging datasets in East and Southeast Asia and synthesize stakeholder-informed processes and recommendations to guide future study design, implementation, sustainability, and data sharing.

Design, Setting, and Participants This qualitative study used semistructured 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 life... (More)
Importance Longitudinal data are crucial for understanding rapid population aging in East and Southeast Asia, yet challenges in establishing and managing infrastructures remain undocumented.

Objective To investigate challenges and adaptations across longitudinal aging datasets in East and Southeast Asia and synthesize stakeholder-informed processes and recommendations to guide future study design, implementation, sustainability, and data sharing.

Design, Setting, and Participants This qualitative study used semistructured 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 life cycle of longitudinal aging studies. Stakeholders were engaged across 13 East and Southeast Asia countries and regions (China, Japan, South Korea, and countries in the Association of Southeast Asian Nations), and experts from India, the United Kingdom, and the US. Participants were a 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.

Main Outcomes and Measures Themes on challenges and strategies in the establishment, implementation, maintenance, and sharing of longitudinal aging data were identified through thematic analysis. An iterative thematic analysis to identify recurring patterns was conducted from January to June 2025.

Results Of 33 participants, 23 (72.7%) were principal investigators or co–principal investigators. Four themes emerged: (1) structural and contextual barriers, including funding instability, collaboration silos, and personnel shortages; (2) adapting research design and logistics to local contexts, addressing cultural differences, data accuracy, and biospecimen handling; (3) retaining funding and staff to ensure sustainability amid external disruptions; and (4) constraints related to data governance, privacy regulations, and limited comparability.

Conclusions and Relevance In this qualitative study of stakeholders involved in longitudinal aging research data systems, participants described structural and contextual barriers, reported adaptations to local research logistics and design, highlighted sustainability threats related to funding and retention, and identified persistent constraints in data governance and cross-study comparability. These findings suggest that building longitudinal aging data ecosystems in East and Southeast Asia requires context-specific strategies aligned with policies, strengthened multidisciplinary collaboration, improved data harmonization, and intentional inclusion of vulnerable populations to inform healthy aging policy, while yielding stakeholder-informed processes and recommendations to support future cohort development and sustainability. (Less)
Please use this url to cite or link to this publication:
author
; ; ; ; ; ; ; ; and , et al. (More)
; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; ; and (Less)
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
JAMA Network Open
volume
9
issue
4
article number
e267536
pages
1 - 14
publisher
American Medical Association
external identifiers
  • pmid:41996115
  • scopus:105035967354
ISSN
2574-3805
DOI
10.1001/jamanetworkopen.2026.7536
language
English
LU publication?
yes
id
068c3399-9d21-4bb1-977c-733b0f085f5e
date added to LUP
2026-04-19 20:00:28
date last changed
2026-05-24 04:01:03
@article{068c3399-9d21-4bb1-977c-733b0f085f5e,
  abstract     = {{Importance  Longitudinal data are crucial for understanding rapid population aging in East and Southeast Asia, yet challenges in establishing and managing infrastructures remain undocumented.<br/><br/>Objective  To investigate challenges and adaptations across longitudinal aging datasets in East and Southeast Asia and synthesize stakeholder-informed processes and recommendations to guide future study design, implementation, sustainability, and data sharing.<br/><br/>Design, Setting, and Participants  This qualitative study used semistructured 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 life cycle of longitudinal aging studies. Stakeholders were engaged across 13 East and Southeast Asia countries and regions (China, Japan, South Korea, and countries in the Association of Southeast Asian Nations), and experts from India, the United Kingdom, and the US. Participants were a 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.<br/><br/>Main Outcomes and Measures  Themes on challenges and strategies in the establishment, implementation, maintenance, and sharing of longitudinal aging data were identified through thematic analysis. An iterative thematic analysis to identify recurring patterns was conducted from January to June 2025.<br/><br/>Results  Of 33 participants, 23 (72.7%) were principal investigators or co–principal investigators. Four themes emerged: (1) structural and contextual barriers, including funding instability, collaboration silos, and personnel shortages; (2) adapting research design and logistics to local contexts, addressing cultural differences, data accuracy, and biospecimen handling; (3) retaining funding and staff to ensure sustainability amid external disruptions; and (4) constraints related to data governance, privacy regulations, and limited comparability.<br/><br/>Conclusions and Relevance  In this qualitative study of stakeholders involved in longitudinal aging research data systems, participants described structural and contextual barriers, reported adaptations to local research logistics and design, highlighted sustainability threats related to funding and retention, and identified persistent constraints in data governance and cross-study comparability. These findings suggest that building longitudinal aging data ecosystems in East and Southeast Asia requires context-specific strategies aligned with policies, strengthened multidisciplinary collaboration, improved data harmonization, and intentional inclusion of vulnerable populations to inform healthy aging policy, while yielding stakeholder-informed processes and recommendations to support future cohort development and sustainability.}},
  author       = {{Tang, Shuhan and Gong, Enying and Xu, Wenqian and Zhou, Kaixin and Lee, Yunhwan and Shobugawa, Yugo and J. Brunner, Eric and Myagmarjav, Sugarmaa and Tan, Maw Pin and Woo, Jean and Rajan, S. Irudaya and Sekher, T. V. and H. Abdul-Mumin, Khadizah and Lee, Taehyun and Yang, Wei and Teerawichitchainan, Bussarawan and Bai, Xue and Anantanasuwong, Dararatt and Lou, Vivian W. Q. and Chu, Wingki and Wu, Chenkai}},
  issn         = {{2574-3805}},
  language     = {{eng}},
  month        = {{04}},
  number       = {{4}},
  pages        = {{1--14}},
  publisher    = {{American Medical Association}},
  series       = {{JAMA Network Open}},
  title        = {{Harnessing Longitudinal Health Data for Aging Populations}},
  url          = {{http://dx.doi.org/10.1001/jamanetworkopen.2026.7536}},
  doi          = {{10.1001/jamanetworkopen.2026.7536}},
  volume       = {{9}},
  year         = {{2026}},
}