IJPDS International Journal of Population Data Science IJPDS 2399-4908 Swansea University 10.23889/ijpds.v9i5.2936 9:5:432 IPDLN Workshop: Opportunities for Cross-Country Comparisons of Linked Administrative Education and Health Data Andersen Anne-Marie Nybo 1 Aradhya Siddartha 2 Bilsteen Josephine Funck 1 Bowden Nick 3 Early Erin 4 Falster Kathleen 5 Flatø Martin 6 Fleming Michael 7 French Rob 8 Hagemann Erika 9 Harron Katie 10 Keating Jen 11 Mika Gissler 12 Mitchell Rebecca 13 Montgomerie Alicia 14 Nickell Nathan 15 Papanicolas Irene 17 Pilkington Rhiannon 14 Romitti Paul 18 Ratnasingham Sujitha 19 Smithers Lisa 20 Valdés Nieves 21 Wilson Ben 2 Department of Public Health, University of Copenhagen, Denmark Stockholm University Demography Unit, Sweden University of Otago, New Zealand Ulster University, Northern Ireland School of Population Health, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia Norwegian Institute of Public Health, Oslo, Norway University of Glasgow, Scotland School of Social Sciences, Cardiff University, Wales The University of Western Australia, Australia UCL, England Cardiff University, Wales THL Finnish Institute for Health and Welfare, Finland Australian Institute of Health Innovation, Macquarie University, Australia BetterStart Health and Development Research,School of Public Health, Faculty of Health and Medical Sciences, The University of Adelaide, Australia Max Rady College of Medicine, Department of Community Health Sciences, University of Manitoba, Canada Brown University, USA Iowa Registry for Congenital and Inherited Disorders, Department of Epidemiology, University of Iowa, USA ICES, University of Toronto, Canada School of Public Health, The University of Adelaide UAI, Chile 30 10 2024 2024 9 5 2936 This work is licenced under a Creative Commons Attribution 4.0 International License. This article is available from the IJPDS website at: https://ijpds.org/article/view/2936 Objectives

To present and discuss the experience and associated ethical, legal and sociotechnical challenges of creating the Center for Data and Knowledge Integration for Health (CIDACS/Fiocruz Bahia-Brazil), initially constructed to link socioeconomic and health data to make it possible to build the 100 Million Brazilians Cohort aimed to investigate the social inequalities in health and the impact of social protection policies on health in low-income and vulnerable populations throughout Brazil.

 Approach

Presentation of CIDACS’ interdisciplinary work focusing on the complexity of building an infrastructure and capacity to conduct record linkage with quality and accuracy and to provide access to deidentified linked datasets to support knowledge production. Based on an interactive discussion was possible exchanging experiences and insights about design and implementing strategies that enable ethical and inclusive data practices aligned with specific characteristics, challenges, and opportunities of Population Data Science in a broader and contextualized perspective.

 Results

The production of scientific knowledge supported by linked data, in addition to ethical and legal adherence to regulations, must consider social dimensions which pose new questions and contextualized solutions considering the rights of data subjects in groups and communities to implement strategies to promote dialogue and involvement with society, particularly with groups covered by linked data, as well as other data stakeholders, e.g. data regulators, data managers, policymakers and data users.

 Conclusions and Implications

From CIDACS’ perspective, the workshop discussed how the main topics regarding populational data science, notably infrastructure, data linkage methods, ethical, legal and social implications, are intertwined and context-dependent. Furthermore, it promoted a comprehensive debate surrounding data practices and public engagement as a dynamic and cumulative process, a perspective which may contribute to similar initiatives in high-income countries.