Case study on challenges in research with public partners: A personal data incident during recruitment for a survey study on ageing and housing
Abstract Objective To highlight experiences from a personal data incident, which occurred during recruitment for a project focused on how housing choices and relocation are related to active and healthy ageing. Results Based on established collaboration, the researchers and representatives of housin...
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BMC
2025-04-01
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| Series: | BMC Research Notes |
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| Online Access: | https://doi.org/10.1186/s13104-025-07246-8 |
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| author | Magnus Zingmark Susanne Iwarsson |
| author_facet | Magnus Zingmark Susanne Iwarsson |
| author_sort | Magnus Zingmark |
| collection | DOAJ |
| description | Abstract Objective To highlight experiences from a personal data incident, which occurred during recruitment for a project focused on how housing choices and relocation are related to active and healthy ageing. Results Based on established collaboration, the researchers and representatives of housing companies planned for recruitment. Invitations to participate was distributed to persons registered with an interest in relocation. The invitation letter included information according to ethical requirements and a link to an online survey. Within a few days, the housing company was contacted by a person who had received the invitation stating that the company had not secured individual consent to the disclosure of personal data to the researchers. The company and the researchers initiated a range of immediate actions to manage the situation, including a plan for how to respond to persons who wanted their person data to be deleted, how to handle already collected data, and for the continued implementation of the recruitment process. We acknowledge that despite established collaboration based on long term commitment from all parties involved, ethical issues require constant attention. Whereas our case represents a hard-learned lesson on a sensitive ethical issue, the well-established collaboration was of paramount importance for how the situation was handled. |
| format | Article |
| id | doaj-art-6b2e71af9374483facd87ea324efefb5 |
| institution | OA Journals |
| issn | 1756-0500 |
| language | English |
| publishDate | 2025-04-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Research Notes |
| spelling | doaj-art-6b2e71af9374483facd87ea324efefb52025-08-20T02:24:26ZengBMCBMC Research Notes1756-05002025-04-011811410.1186/s13104-025-07246-8Case study on challenges in research with public partners: A personal data incident during recruitment for a survey study on ageing and housingMagnus Zingmark0Susanne Iwarsson1Department of Health Sciences, Lund UniversityDepartment of Health Sciences, Lund UniversityAbstract Objective To highlight experiences from a personal data incident, which occurred during recruitment for a project focused on how housing choices and relocation are related to active and healthy ageing. Results Based on established collaboration, the researchers and representatives of housing companies planned for recruitment. Invitations to participate was distributed to persons registered with an interest in relocation. The invitation letter included information according to ethical requirements and a link to an online survey. Within a few days, the housing company was contacted by a person who had received the invitation stating that the company had not secured individual consent to the disclosure of personal data to the researchers. The company and the researchers initiated a range of immediate actions to manage the situation, including a plan for how to respond to persons who wanted their person data to be deleted, how to handle already collected data, and for the continued implementation of the recruitment process. We acknowledge that despite established collaboration based on long term commitment from all parties involved, ethical issues require constant attention. Whereas our case represents a hard-learned lesson on a sensitive ethical issue, the well-established collaboration was of paramount importance for how the situation was handled.https://doi.org/10.1186/s13104-025-07246-8Transdisciplinary researchUser involvementCo-designParticipatory designEuropean general data protection regulation (GDPR) |
| spellingShingle | Magnus Zingmark Susanne Iwarsson Case study on challenges in research with public partners: A personal data incident during recruitment for a survey study on ageing and housing BMC Research Notes Transdisciplinary research User involvement Co-design Participatory design European general data protection regulation (GDPR) |
| title | Case study on challenges in research with public partners: A personal data incident during recruitment for a survey study on ageing and housing |
| title_full | Case study on challenges in research with public partners: A personal data incident during recruitment for a survey study on ageing and housing |
| title_fullStr | Case study on challenges in research with public partners: A personal data incident during recruitment for a survey study on ageing and housing |
| title_full_unstemmed | Case study on challenges in research with public partners: A personal data incident during recruitment for a survey study on ageing and housing |
| title_short | Case study on challenges in research with public partners: A personal data incident during recruitment for a survey study on ageing and housing |
| title_sort | case study on challenges in research with public partners a personal data incident during recruitment for a survey study on ageing and housing |
| topic | Transdisciplinary research User involvement Co-design Participatory design European general data protection regulation (GDPR) |
| url | https://doi.org/10.1186/s13104-025-07246-8 |
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