Building a Sustainable Learning Health Care System for Pregnant and Lactating People: Interview Study Among Data Access Providers.
Marieke J HollestelleRieke van der GraafMiriam C J M SturkenboomMarianne CunningtonJohannes J M van DeldenPublished in: JMIR pediatrics and parenting (2024)
Our respondents were motivated by diverse opportunities to contribute to an LHS for pregnant and lactating people, primarily centered on advancing knowledge on medication safety. Although a shared responsibility for enabling real-world data analyses is acknowledged, their focus remains on their work and contribution to the project rather than on safeguarding ethical data handling. The results of our interviews underline the importance of a transparent governance structure, emphasizing the trust between DAPs and the public for the success and sustainability of an LHS.