Making big data meaningful for a promising start
Kansen voor kinderen met betekenisvol datagebruik
Alle kinderen verdienen een kansrijke start. Maar sommige kinderen beginnen met een achterstand, door problemen tijdens de zwangerschap of doordat ze opgroeien in gezinnen waar risico’s spelen, zoals armoede, verslaving, of psychische problemen. Deze achterstand kan soms levenslange gevolgen hebben. In dit project onderzoeken wij hoe relevante databestanden, o.a. van het Centraal Bureau van de Statistiek, gebruikt kunnen worden om deze kinderen en (aanstaande) gezinnen beter te helpen. Door ze tijdig in beeld te krijgen voor passende hulpverlening. En door gemeentelijk beleid beter af te stemmen op hun behoeften. Wij werken samen met ouders in kwetsbare omstandigheden, hulpverleners en gemeenten, zodat ons onderzoek aansluit bij hun behoeften en prioriteiten.
All children deserve a promising start. Most children are doing fine. But some need extra support, because of problems during pregnancy or because they grow up in disadvantaged circumstances, e.g. due to poverty, parental addictions or psychological problems. This start lag may have lifelong consequences. The researchers will investigate how relevant datasets, for example from Statistics Netherlands (CBS), can be used to support these children and (expectant) parents. By ensuring more timely referral to services that meet their needs. And by tailoring municipal polities to the needs of vulnerable children and (expectant) parents. The researchers will collaborate with parents, practitioners and municipalities to ensure our research meets their priorities.
Samenvatting van de aanvraag
Background The first 1000 days of a child are of fundamental importance for healthy physical, cognitive and social-emotional development. A poor start can have lifelong consequences, for physical and mental health, and economic and social participation. Many children lead a less flourishing life due to adverse conditions in-utero and postnatally, and the structural drivers of these conditions outside the health sector. Early preventive interventions and policies can have huge, long-run benefits for individuals and society. This requires 1) support to professionals to better identify vulnerable (expectant) parents and children and provide tailored care, and 2) support to municipalities for evidence-based policy making, 3) involving and informing (expectant) vulnerable families. New opportunities for linking administrative data from across societal sectors for the entire Dutch population, combined with advances in data analytics, hold potential for supporting prevention in the first 1000 days. Such efforts should: - meet the needs and concerns of families, professionals, and policy makers, requiring stakeholder participation throughout; - actively reduce inequalities and stigmatisation; - be based on an understanding of vulnerability as a complex problem, requiring cross-sectoral action in which tailored interventions and precision public health policies are combined. This is exactly what we will do. Aims By combining stakeholder participation with data science methods applied to linked administrative data (e.g. Statistics Netherlands, Netherlands Perinatal Registry, Youth Health Care, Vektis), and by building on our extensive experience with vulnerable families in practice and policy making, we aim to: 1. develop guidance on the use of big data for practice & policy in the first 1000 days 2. develop a dynamic tool to support professionals across the care chain in the first 1000 days to identify vulnerable families and tailor interventions 3. develop a roadmap for tailoring municipal policy making for vulnerable families, and implement this in our ‘living lab’ Rotterdam Methods We will: 1. use complex systems mapping to visualize evidence on the web of factors leading to vulnerability in the first 1000 days to support meaningful identification and policy making, and consult on this map with stakeholders 2. conduct data dialogues with vulnerable families, practitioners and policy makers to define the conditions under which big data can be used from their perspective 3. use consultations with vulnerable families and practitioners to develop an overview of problems in current practice of identification and referral and what is needed to address these problems 4. develop prediction models for adverse outcomes across the life course based on risk factors in the first 1000 days, comparing traditional prediction modelling and machine learning (ML) techniques 5. develop vulnerability profiles using traditional and ML-based clustering techniques to support tailoring of interventions and policies 6. integrate our models in existing digital personal health environments as a dynamic tool for identification of vulnerable (expectant) parents and children across the care chain throughout the first 1000 days; this gives parents control over their data 7. develop municipal-level forecasts of the burden of adverse outcomes due to vulnerability in the first 1000 days to support policy making 8. develop a blueprint for a municipal level vulnerability dashboard, and implement this in Rotterdam 9. develop a roadmap for municipal tailoring of policy-making, using Rotterdam as living-lab, by comparing the complex systems map of vulnerability to the empirical and policy reality in Rotterdam, combining this with our newly generated evidence, to highlight entry points for policy tailoring, and integrate this in ongoing policy processes. Our consortium consists of professionals and organisations with long-standing experience in working with vulnerable (expectant) families and children in clinical practice, policy and research. In the Netherlands, municipalities coordinate services for children and families in need. Our consortium member City of Rotterdam, is at the forefront of identifying these families and providing tailored care. Our work will provide evidence on the added value, limitations, risks and conditions under which big data and analytics can be used for a promising start in the first 1000 days, guiding future work in this area. It will provide tools for professionals to provide more timely and tailored support to vulnerable (expectant) parents and children and to policy makers to tailor policies to needs. By addressing the needs and concerns of parents, practitioners, and policy makers, and by embedding our work in regional care networks and a municipal government living-lab, and supporting roll-out to other municipalities, our work provides a strong base for improving the first 1000 days of Dutch children.