A learning health system is a system where healthcare and research align, sharing data to accelerate research and improve patients’ access to new treatments through this crossover. A recent ConcePTION publication explores the perspectives of the actors providing access to this data (data access providers). Data access providers shared their own motivation to participate in a learning healthcare system, but also emphasized the need for resources and safeguards, and underlined the importance of alignment between different actors, and a good governance system.
Access to meaningful health data is one of the main challenges in developing the learning healthcare system that could help speed up the knowledge production regarding medicine safety in pregnancy and breastfeeding.
Data-intensive health research, integral to a learning health system, requires meaningful data access. And data access providers have an important role to play. For pregnancy and lactation, this requires collaborations among various organisations, including both collaboration between different public organisations and public-private partnerships.
The authors of an article recently published in JMIR Pediatrics and Parenting share the results of their interviews with representatives of such data access providers, who are the gatekeepers of different unique datasets that together can contribute to closing the knowledge gap about medicine safety for pregnant and breastfeeding women.
“Many data access providers are motivated to contribute to a learning healthcare system, contributing their expertise regarding the collection and processing of pregnancy data. They underline the importance of a transparent governance structure that addresses decision-making processes, authority, responsibility, and accountability. Trust between data access providers and public trust in them are important for the success of a public-private collaborative Learning Health System, and with that, the sustainability of such a collaboration. Developing such a system requires that all relevant stakeholders recognize and embrace the need for and added value of the system itself,” says Marieke Hollestelle, bioethicist at the University Medical Center Utrecht and one of the authors.
By Anna Holm Bodin
Hollestelle MJ, van der Graaf R, Sturkenboom MCJM, Cunnington M, van Delden JJM, Building a Sustainable Learning Health Care System for Pregnant and Lactating People: Interview Study Among Data Access Providers, JMIR Pediatr Parent, 2024;7:e47092, DOI: 10.2196/47092