Return of research results to participants in longitudinal cohort studies in health research
Abstract
Background: Returning research results to participants is increasingly recognised as part of participant-centred health research, yet how this is implemented in cohort studies remains largely undescribed. This study provides a descriptive overview of current result return practices across diverse cohort studies in the Netherlands.
Methods: Drawing on the Amsterdam Cohort Hub, an infrastructure of population-based and patient-based cohorts in the Netherlands, representatives of 24 affiliated cohort studies completed a structured questionnaire administered via individual interviews. The questionnaire covered what results are returned, to whom, when, and how. Individual-level and group-level return were distinguished. Cohorts also reported on motivations for returning results and barriers encountered in doing so. Data were summarised descriptively using frequencies.
Results: Individual-level results beyond incidental findings were returned by 14 cohorts (58%), while group-level results were returned by 23 cohorts (96%). Individual-level return primarily involved physical and laboratory measures or was embedded in routine clinical care. Group-level results were mainly shared through newsletters. Limited resources were reported as a barrier by 15 cohorts (65%) and concerns about participant misinterpretation by 14 cohorts (61%).
Conclusions: Return of research results is widely practiced across cohort studies but varies considerably in approach, shaped by ethical considerations, practical constraints, and available resources. Individual-level and group-level return follow different logics and require different expertise and infrastructure. Taken together, this overview offers cohorts a practical reference for reflecting on their own result return practices. Our findings highlight a structural gap between growing expectations for participant-centred research and the resources and guidance available to support it in cohort settings.
Key messages: • Return of research results is widely practiced in cohort studies but varies considerably, shaped by cohort type, clinical context, and available resources.
• Limited funding and communication complexity are key barriers, highlighting the need for shared guidance and dedicated support for result return in cohort research.
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BibTeX
@article{qi2026return,
title = {{Return of research results to participants in longitudinal cohort studies in health research}},
author = {Y Qi and ACH Amsterdam Cohort Hub Group and EO Hoogendijk},
journal = {The European Journal of Public Health},
year = {2026},
month = oct,
doi = {10.1093/eurpub/ckag169.1301},
url = {https://doi.org/10.1093/eurpub/ckag169.1301},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - Return of research results to participants in longitudinal cohort studies in health research
AU - Y Qi
AU - ACH Amsterdam Cohort Hub Group
AU - EO Hoogendijk
PY - 2026
DA - 2026/10/01
JO - The European Journal of Public Health
DO - 10.1093/eurpub/ckag169.1301
UR - https://doi.org/10.1093/eurpub/ckag169.1301
AB - Background: Returning research results to participants is increasingly recognised as part of participant-centred health research, yet how this is implemented in cohort studies remains largely undescribed. This study provides a descriptive overview of current result return practices across diverse cohort studies in the Netherlands. Methods: Drawing on the Amsterdam Cohort Hub, an infrastructure of population-based and patient-based cohorts in the Netherlands, representatives of 24 affiliated cohort studies completed a structured questionnaire administered via individual interviews. The questionnaire covered what results are returned, to whom, when, and how. Individual-level and group-level return were distinguished. Cohorts also reported on motivations for returning results and barriers encountered in doing so. Data were summarised descriptively using frequencies. Results: Individual-level results beyond incidental findings were returned by 14 cohorts (58%), while group-level results were returned by 23 cohorts (96%). Individual-level return primarily involved physical and laboratory measures or was embedded in routine clinical care. Group-level results were mainly shared through newsletters. Limited resources were reported as a barrier by 15 cohorts (65%) and concerns about participant misinterpretation by 14 cohorts (61%). Conclusions: Return of research results is widely practiced across cohort studies but varies considerably in approach, shaped by ethical considerations, practical constraints, and available resources. Individual-level and group-level return follow different logics and require different expertise and infrastructure. Taken together, this overview offers cohorts a practical reference for reflecting on their own result return practices. Our findings highlight a structural gap between growing expectations for participant-centred research and the resources and guidance available to support it in cohort settings. Key messages: • Return of research results is widely practiced in cohort studies but varies considerably, shaped by cohort type, clinical context, and available resources. • Limited funding and communication complexity are key barriers, highlighting the need for shared guidance and dedicated support for result return in cohort research.
SN - 1101-1262
SN - 1464-360X
ER -