Observational Data for Integrated Maternity Care: Experiences with a Data-Infrastructure for Parents and Children in the Netherlands

Abstract

Introduction: Observational data are increasingly seen as a valuable source for integrated care research. Especially since the growing availability of routinely collected data and quasi-experimental methods. The aim of this paper is to describe the potentials and challenges when using observational data for integrated maternity care research, based on our experience from developing and working with the Data-InfrAstructure for ParEnts and childRen (DIAPER). Methods and Results: We provide a description of DIAPER, which is a linked data-infrastructure on the individual level based on maternity care claims data, quality and utilization of maternity care and data from municipal registries, covering the life course from preconception to adulthood. We then discuss potentials and practical applications of DIAPER such as to evaluate alternative payment models for integrated maternity care, to set the policy agenda regarding postpartum care, to provide insights into value of care and into provider variation, and to evaluate (policy) interventions designed to promote and support integrated maternity care. This is relevant for several stakeholders: policy makers, payers, providers and clients/patients. Based on experiences with DIAPER, we identify remaining challenges: missing data sources (especially self-reported outcomes), suboptimal quality of data, privacy concerns and potential biases introduced during data linkage, and describe how these challenges were tackled within the applications of DIAPER. Conclusions: With DIAPER we demonstrated that using observational data can be of added value for integrated care research, but also that challenges remain. It is essential to keep exploring and developing the possibilities of observational data and continue the discussions in the scientific community. Learning from each other’s successes and failures will be critical.