Counting Every Child - implementation and methods in registry-based epidemiology
This course will take you through the core methods in development and implementation of digital health registries for child health using free and open-source systems, as well as the basics of registry-based epidemiology in using such datasets.
J. Frederik Frøen, Research Director of the Division for Health Services, Norwegian Institute of Public Health, and Professor at Department of Global Public Health and Primary Care, UiB.
Nina Øyen, Professor in Epidemiology at Department of Global Public Health and Primary Care, University of Bergen (UiB) and Senior Consultant in Clinical Genetics, Haukeland University Hospital, Bergen.
Counting every child and effective monitoring of universal health coverage through the continuity of care, from pregnancy to adolescence, requires population-based public health registries. Counting adverse outcomes in children requires comparisons to numbers in the general population registered in public heath registers.
The number of LMIC introducing digital health registries is increasing rapidly, e.g. for antenatal care, births, childhood immunization, and child nutrition programs. The WHO is promoting digital health registries in the form of digital adaptation kits for their guidelines to strengthen public health services. Few LMIC have a long experience and capacity in development, implementation, and effective use and analysis of registry data, and scientific competency in this field is in growing demand.
What can digital health registries do for child health?
This course starts with a day of exploring the current status of global data for child health, the gaps, how routine public health registries can help fill the gaps. We introduce new knowledge, interventions, strengthening of health systems, and research opportunities that arise with the designs and methods of population-based registries.
Development and implementation of digital health registries
Few of the benefits from digital health registries are gained from simply transferring paper registers to digital “paper on screen”. Nor will a state-of-the-art digital health registry deliver if not implemented appropriately. Understanding how health registries are designed and implemented is critical to understanding how to use and analyze the data. In two days, we will walk you through theories, methods, freely available open source tools, ethical and legal considerations, and implementation strategies in developing digital health registries in LMIC settings. We will show you case stories of implementations, and how implementation and design affect data.
Core methods in registry-based epidemiology
The following four days, you will learn the basics and particularities of registry-based epidemiology. What kind of data do you get from various types of registries? How do you assess and address data quality issues? What are valuable designs and methods for analysis? How to avoid or reduce bias and confounding? How to understand causality when using registry-based data?
You should have some basic training in epidemiology and statistics to fully benefit from these four days (see reading list).
The candidates will be able to:
- Understand the role of, and opportunities presented by, digital health registries for public health systems strengthening and public health epidemiology
- Know the methods and theories needed to overcome known challenges to successfully develop and implement digital health registries
- Know the key concepts and core methods in planning, managing, analyzing, and understanding registry-based data in public health epidemiology
- Understand the core concepts and methods in register-based epidemiology including study designs, counting, effect measures, bias and confounding, and assessment of causality
- Identify pitfalls and flaws in previously published papers
Skills and general competencies
The candidates will be able to identify opportunities for public health epidemiology and health systems strengthening arising from the growing number of digital health registries in LMIC, and contribute constructively to their development, implementation, and appropriate analysis and use of the data in public health epidemiology.
The candidates will fully benefit from the course if they have a background training equivalent to having read a recent edition of the textbook “Epidemiology – an introduction” by Kenneth J. Rothman, Oxford University Press or any similar introduction to concepts in epidemiology and biostatistics or public health informatics for example the E-book “Epidemiology: Principles and Practical Guidelines” edited by Jan van der Broeck and Jonathan R Brestoff.
Discussion papers to come.
Participation at the BSRS is credited under the European Credit Transfer System (ECTS). Participants submitting an essay, in a form of a publishable manuscript of 10-20 pages, after the end of the summer school will receive 10 ECTS. Deadline for submission will be decided by your course leader.
It is also possible to participate without producing an essay. This will give you 5 ECTS. In order to receive credits, we expect full participation in the course-specific modules, plenary events and roundtables.
Candidates who plan to submit an essay to earn the additional 5 ECTS, will be guided throughout the course to develop an outline of a study protocol related to either the development, implementation, or analysis of health registry data, according to the setting they work.
J. Frederik Frøen is the Research Director of the Division for Health Services, Norwegian Institute of Public Health (NIPH), with an adjunct position as Professor at Department of Global Public Health and Primary Care, UiB. He leads a reproductive, maternal and child health (RMNCH) team at the NIPH, undertaking research and implementation of various projects in registry-based digital health for RMNCH in LMIC. His professorship at UiB is with the Norwegian Research Council’s Centre of Excellence “Center for Intervention Science for Maternal and Child Health” (CISMAC). He is an MD from UiB and received PhDs in pediatrics and obstetrics from the University of Oslo.
Nina Øyen is Professor in Epidemiology at Department of Global Public Health and Primary Care, University of Bergen (UiB) and Senior Consultant in Clinical Genetics, Haukeland University Hospital (HUS), Bergen. Øyen has 35 years of experience in register-based epidemiology research. At present she leads a Congenital Heart Defect research team utilizing national health registers to identify risk factors for such heart malformations and to identify adverse pregnancy and delivery outcomes in women with congenital heart malformations in Norway. Øyen holds an MD from UiB and MPH from UCLA School of Public Health, Los Angeles, USA. She received her Doctor of Medicine in epidemiology/pediatrics from UiB and her specialist training in Medical Genetics at HUS.