Population Data Science: Advancing the safe use of population data for public benefit
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OBJECTIVES: The value of population data to answer important questions for individual and societal benefit has never been greater. Governments and research funders world-wide are recognizing this potential and making major investments in data-intensive initiatives. However, there are challenges to overcome so that safe, socially-acceptable data sharing can be achieved. METHODS: This paper outlines the field of Population Data Science, the International Population Data Linkage Network (IPDLN) and their roles in advancing data-intensive research. We provide an overview of core concepts and major challenges for data-intensive research, with a particular focus on ethical, legal and societal implications (ELSI). Using international case studies, we show how challenges can be addressed and lessons learned in advancing the safe, socially-acceptable use of population data for public benefit. RESULTS: From the case studies, we discuss the common ELSI principles in operation, we illustrate an example data scrutiny panel and a consumer panel, and we propose a set of ELSI-based recommendations to inform new and developing data-intensive initiatives. CONCLUSIONS: We conclude that although there are many ELSI issues to be overcome, there has never been a better time or more potential to leverage the benefits of population data for public benefit. There is a variety of initiatives, with different operating models, that have pioneered the way in addressing many challenges. However, the work is not static as the ELSI environment is constantly evolving, thus requiring continual mutual learning and improvement via the IPDLN and beyond.
Abstract
OBJECTIVES: The value of population data to answer important questions for individual and societal benefit has never been greater. Governments and research funders world-wide are recognizing this potential and making major investments in data-intensive initiatives. However, there are challenges to overcome so that safe, socially-acceptable data sharing can be achieved. METHODS: This paper outlines the field of Population Data Science, the International Population Data Linkage Network (IPDLN) and their roles in advancing data-intensive research. We provide an overview of core concepts and major challenges for data-intensive research, with a particular focus on ethical, legal and societal implications (ELSI). Using international case studies, we show how challenges can be addressed and lessons learned in advancing the safe, socially-acceptable use of population data for public benefit. RESULTS: From the case studies, we discuss the common ELSI principles in operation, we illustrate an example data scrutiny panel and a consumer panel, and we propose a set of ELSI-based recommendations to inform new and developing data-intensive initiatives. CONCLUSIONS: We conclude that although there are many ELSI issues to be overcome, there has never been a better time or more potential to leverage the benefits of population data for public benefit. There is a variety of initiatives, with different operating models, that have pioneered the way in addressing many challenges. However, the work is not static as the ELSI environment is constantly evolving, thus requiring continual mutual learning and improvement via the IPDLN and beyond.
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