Deltagaruppgifter

Deltagaruppgifter is a term used in Swedish research and project administration to refer to information that identifies or can be used to contact individuals who participate in a study or project. Deltagaruppgifter may include direct identifiers such as name, address, phone number, and national identity number, as well as indirect identifiers like birth year, gender, or health data that could be linked to a person. Collectively they enable recruitment, communication, and linkage of responses to the same participant across different data sources, while also enabling data analysis.

In ethical and legal terms, handling deltagaruppgifter is subject to privacy protections. In many contexts data is processed only with informed consent and necessity to fulfill the study purpose, and data minimization should be applied. Organizations must implement appropriate security measures to protect these data, including access controls, encryption, pseudonymization, and secure storage. When possible, researchers should separate identifying information from research data using a code key that only authorized personnel hold.

Legal framework includes the General Data Protection Regulation (GDPR) within the EU, complemented by national practices and, for health research, ethics review requirements. Data controllers determine purposes and means of processing deltagaruppgifter, while data processors may handle data on their behalf under contracts.

Retention and destruction policies govern how long deltagaruppgifter are kept, with preference for anonymized or aggregated data when possible. Participants have rights to access, rectify, or erase data, request data portability, or withdraw consent.

The term highlights the balance between enabling research and protecting individuals’ privacy during data collection, storage, and sharing.