Sharing traumatic stress research data: assessing and reducing the risk of re-identification
Background: FAIR Data practices support data sharing and re-use and are essential for advancing science and practice to benefit individuals, families, and communities affected by trauma. In traumatic stress research, as in other health and social science research, ethical, legal, and regulatory fram...
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| Format: | Article |
| Language: | English |
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Taylor & Francis Group
2025-12-01
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| Series: | European Journal of Psychotraumatology |
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| Online Access: | https://www.tandfonline.com/doi/10.1080/20008066.2025.2499296 |
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| author | Nancy Kassam-Adams Kristi Thompson Marit Sijbrandij Grete Dyb |
| author_facet | Nancy Kassam-Adams Kristi Thompson Marit Sijbrandij Grete Dyb |
| author_sort | Nancy Kassam-Adams |
| collection | DOAJ |
| description | Background: FAIR Data practices support data sharing and re-use and are essential for advancing science and practice to benefit individuals, families, and communities affected by trauma. In traumatic stress research, as in other health and social science research, ethical, legal, and regulatory frameworks require careful attention to data privacy. Most traumatic stress researchers are aware of basic methods for de-identifying/anonymising datasets that are to be shared. But our field has not generally made use of systematic, data analytic approaches to reduce the risk of re-identification of study participants or disclosure of personal or sensitive information.Objective: To facilitate safe and ethical data sharing by better preparing traumatic stress researchers to systematically assess and reduce re-identification risk using contemporary data analytic methods.Method: In two case studies using publicly available trauma research datasets from international, multi-language projects, we applied a systematic approach guided by the Checklist for Reducing Re-Identification Risk in Traumatic Stress Research Data.Results: For each case study dataset, we identified specific recommended actions to further reduce the risk of re-identification, and we then communicated these recommendations to the original investigators. After implementing the recommended changes, each dataset is judged to be at very low re-identification risk.Discussion: The particular nature of traumatic stress research, i.e. its content, data, and study designs, can influence the likelihood and potential impact of re-identification or disclosure. The two worked case examples in this paper demonstrate the utility of applying a systematic approach to assess and further mitigate re-identification risk in shared datasets. At each stage of the research data lifecycle, there are research practices and choices relevant to reducing re-identification risk. This paper presents practical tips for research teams to facilitate FAIR data practices while attending to data privacy. |
| format | Article |
| id | doaj-art-63485f68c3894ca19c020ea43374da50 |
| institution | DOAJ |
| issn | 2000-8066 |
| language | English |
| publishDate | 2025-12-01 |
| publisher | Taylor & Francis Group |
| record_format | Article |
| series | European Journal of Psychotraumatology |
| spelling | doaj-art-63485f68c3894ca19c020ea43374da502025-08-20T03:08:01ZengTaylor & Francis GroupEuropean Journal of Psychotraumatology2000-80662025-12-0116110.1080/20008066.2025.2499296Sharing traumatic stress research data: assessing and reducing the risk of re-identificationNancy Kassam-Adams0Kristi Thompson1Marit Sijbrandij2Grete Dyb3Center for Injury Research & Prevention, Children’s Hospital of Philadelphia, Philadelphia, PA, USAWestern Libraries, Western University, London, CanadaDepartment of Clinical, Neuro-, and Developmental Psychology, Amsterdam Public Health Institute, WHO Collaborating Center for Research and Dissemination of Psychological Interventions, Vrije Universiteit, Amsterdam, The NetherlandsNorwegian Center for Violence and Traumatic Stress Studies, Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, NorwayBackground: FAIR Data practices support data sharing and re-use and are essential for advancing science and practice to benefit individuals, families, and communities affected by trauma. In traumatic stress research, as in other health and social science research, ethical, legal, and regulatory frameworks require careful attention to data privacy. Most traumatic stress researchers are aware of basic methods for de-identifying/anonymising datasets that are to be shared. But our field has not generally made use of systematic, data analytic approaches to reduce the risk of re-identification of study participants or disclosure of personal or sensitive information.Objective: To facilitate safe and ethical data sharing by better preparing traumatic stress researchers to systematically assess and reduce re-identification risk using contemporary data analytic methods.Method: In two case studies using publicly available trauma research datasets from international, multi-language projects, we applied a systematic approach guided by the Checklist for Reducing Re-Identification Risk in Traumatic Stress Research Data.Results: For each case study dataset, we identified specific recommended actions to further reduce the risk of re-identification, and we then communicated these recommendations to the original investigators. After implementing the recommended changes, each dataset is judged to be at very low re-identification risk.Discussion: The particular nature of traumatic stress research, i.e. its content, data, and study designs, can influence the likelihood and potential impact of re-identification or disclosure. The two worked case examples in this paper demonstrate the utility of applying a systematic approach to assess and further mitigate re-identification risk in shared datasets. At each stage of the research data lifecycle, there are research practices and choices relevant to reducing re-identification risk. This paper presents practical tips for research teams to facilitate FAIR data practices while attending to data privacy.https://www.tandfonline.com/doi/10.1080/20008066.2025.2499296FAIR datadata sharingde-identificationanonymisationre-identification riskDatos FAIR |
| spellingShingle | Nancy Kassam-Adams Kristi Thompson Marit Sijbrandij Grete Dyb Sharing traumatic stress research data: assessing and reducing the risk of re-identification European Journal of Psychotraumatology FAIR data data sharing de-identification anonymisation re-identification risk Datos FAIR |
| title | Sharing traumatic stress research data: assessing and reducing the risk of re-identification |
| title_full | Sharing traumatic stress research data: assessing and reducing the risk of re-identification |
| title_fullStr | Sharing traumatic stress research data: assessing and reducing the risk of re-identification |
| title_full_unstemmed | Sharing traumatic stress research data: assessing and reducing the risk of re-identification |
| title_short | Sharing traumatic stress research data: assessing and reducing the risk of re-identification |
| title_sort | sharing traumatic stress research data assessing and reducing the risk of re identification |
| topic | FAIR data data sharing de-identification anonymisation re-identification risk Datos FAIR |
| url | https://www.tandfonline.com/doi/10.1080/20008066.2025.2499296 |
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