Population data science: advancing the safe use of population data for public benefit

Abstract

The value of using 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. 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. Based on the case studies, we discuss the common ELSI principles in operation, we illustrate examples of a data scrutiny panel and a consumer panel, and we propose a set of ELSI-based recommendations to inform new and developing data-intensive initiatives.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. A variety of initiatives, with different operating models, 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.

Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study

“…We have limited this study to public views on the reuse of genomic data collected for research because this is the main source of extant genomic data and because the sharing of data contained in the health record is subject to health provider data governance, including repurposing in line with jurisdictional legislation. There are numerous long-established enterprises across the world that reuse population health data in anonymized form for research, using datasets drawn from existing health records rather than engaging in primary data collection [19]. We recognize this as distinct from data collected for research and are not making any recommendations in relation to the work of these enterprises other than to state that an insistence on additional consent for the reuse of health record data would be impractical and highly detrimental to such research [20].…”

Exploring barriers and solutions in advancing cross-centre population data science

“…This should include a review of the relevant instruments in discussion with legal experts and data controllers. This is also important because data centres will have differing operating models and means of data access which must be taken into account to determine the optimum combined model for an instance of cross-centre working to ensure safety and maximum data utility [23,31].…”

Panel 4: Recent advances in understanding the natural history of the otitis media microbiome and its response to environmental pressures

“…Due to the expanding use of electronic record keeping for health data, there has been an increase in the use of use of large, system-derived datasets and data linkage projects in health research [139]. In OM, studies using large data resources (e.g.…”