168 CHAPTER 6 and monitoring strategies are suitable for subsequent stages in the action program’s implementation, with a focus on ensuring sustainability? Challenges and opportunities with routinely collected data Several papers in this thesis used DIAPER, a unique data infrastructure that links routinely collected data from several Dutch data sources. Covering the life course from preconception to adulthood, DIAPER provides insights to policy makers, payers and providers in several early life projects (87). Routinely collected data provide the opportunity to study real world situations, leading to results that have strong external validity without additional costs and time spent in collecting data. However, it is essential to consider potential challenges or risks as detailed in Scheefhals’(87) and Ardesch’(46) paper, which related to the quality of the data and its linkages, privacy concerns, missing data and administrative delay. Regarding data quality, it is important to acknowledge that, since data is primarily collected for care purposes and only subsequently used for research, some data may be incomplete or inaccurate. In the linkage of data, there is a risk of errors introducing bias that may disproportionately affect disadvantaged groups that are underrepresented in the data. Privacy concerns that may arise because of increased (technical) possibilities require constant attention and advanced methods for privacy protection. Concerning missing data, the absence of nationwide youth healthcare data (88) is of notable concern. It poses challenges to study children’s health, development and underlying determinants, as well as the program’s ultimate impact. Additionally, self-reported (experience) measures of parents are lacking. Administrative delays further impede research efforts, as data often becomes available only after undergoing several integration steps and quality checks, limiting its utility in rapid processes of learning and decision-making. Despite these challenges, DIAPER appeared a valuable source to gain insight into vulnerability and to present the data to indicators at both national and local levels. In order to optimize the utilization of DIAPER for (flexible) practice- and policy-oriented research related to the action program Solid Start and other early life initiatives, three recommendations are proposed. Firstly, the inclusion of youth healthcare data and selfreported (experience) measures, and openness to the possibility of adding additional data depending on the research topic. This could be data from GP practices, schools or specific population-based birth cohorts. Secondly, a proactive approach to identify knowledge gaps relevant to everyday practice and policy, and a flexible allocation of our research time to answer those more ad-hoc questions. Thirdly, an exploration into the feasibility of developing a DIAPER 2.0 version that presents real-time data (e.g. on a monthly basis) from various sectors to support short-term decision-making in daily practice and policy. Throughout these endeavours, it is essential to address stakeholders’ potential concerns and communicate the shared benefits to facilitate a supported approach. This also entails that we increase our efforts towards ‘open science’ and adherence to the FAIR guiding principles ensuring the Findability, Accessibility, Interoperability and Reuse of data (89). For example, we can improve by pre-registering our research methodologies and analysis plan, sharing our scripts (via platforms like GitHub), and uploading preprints of scientific papers.
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