Project title: Data management for promoting research while protecting privacy
Rationale:Overly strict coding and management procedures for linking and sharing data are detrimental both to research and privacy.
Objectives:Develop HELICAL GDPR/FAIR-consistent data management plan (Objective 12). Develop a participatory concept of privacy that is balanced with the needs of research. Evaluate different models for coding, linking and giving access to personal data (Objective 13).
Expected Results:Understanding of what respect for privacy implies for linking and sharing of data. Assessment of technical solutions for protection of privacy in research regarding their capacity to both protect privacy and enable efficient research. Policy for FAIR access to and sharing of data.
Planned Secondments:Farr 1 mth (Safe haven requirements), LIDA 1 mth (learn from the lessons of CPRD), CU 2 mths (apply findings to real-life biobank)