Skip Navigation
Skip to contents

Epidemiol Health : Epidemiology and Health


Author index

Page Path
HOME > Browse articles > Author index
Kerina Helen Jones 1 Article
Population data science: advancing the safe use of population data for public benefit
Kerina Helen Jones, David Vincent Ford
Epidemiol Health. 2018;40:e2018061.   Published online December 25, 2018
  • 10,329 View
  • 153 Download
  • 8 Web of Science
  • 9 Crossref
AbstractAbstract PDF
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.


Citations to this article as recorded by  
  • ‘What about the dads?’ Linking fathers and children in administrative data: A systematic scoping review
    Irina Lut, Katie Harron, Pia Hardelid, Margaret O’Brien, Jenny Woodman
    Big Data & Society.2022; 9(1): 205395172110692.     CrossRef
  • The Social Data Foundation model: Facilitating health and social care transformation throughdatatrust services
    Michael Boniface, Laura Carmichael, Wendy Hall, Brian Pickering, Sophie Stalla-Bourdillon, Steve Taylor
    Data & Policy.2022;[Epub]     CrossRef
  • Fostering trustworthy data sharing: Establishing data foundations in practice
    Sophie Stalla-Bourdillon, Laura Carmichael, Alexsis Wintour
    Data & Policy.2021;[Epub]     CrossRef
  • Interdisciplinary data science to advance environmental health research and improve birth outcomes
    Jeanette A. Stingone, Sofia Triantafillou, Alexandra Larsen, Jay P. Kitt, Gary M. Shaw, Judit Marsillach
    Environmental Research.2021; 197: 111019.     CrossRef
  • Considerations for an integrated population health databank in Africa: lessons from global best practices
    Jude O. Igumbor, Edna N. Bosire, Marta Vicente-Crespo, Ehimario U. Igumbor, Uthman A. Olalekan, Tobias F. Chirwa, Sam M. Kinyanjui, Catherine Kyobutungi, Sharon Fonn
    Wellcome Open Research.2021; 6: 214.     CrossRef
  • The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement
    Julie A Taylor, Sonya Crowe, Ferran Espuny Pujol, Rodney C Franklin, Richard G Feltbower, Lee J Norman, James Doidge, Doug William Gould, Christina Pagel
    BMJ Open.2021; 11(8): e047575.     CrossRef
  • Panel 4: Recent advances in understanding the natural history of the otitis media microbiome and its response to environmental pressures
    Robyn L. Marsh, Celestine Aho, Jemima Beissbarth, Seweryn Bialasiewicz, Michael Binks, Anders Cervin, Lea-Ann S. Kirkham, Katherine P. Lemon, Mary P.E. Slack, Heidi C. Smith-Vaughan
    International Journal of Pediatric Otorhinolaryngology.2020; 130: 109836.     CrossRef
  • Age-Dependent and Seasonal Changes in Menstrual Cycle Length and Body Temperature Based on Big Data
    Takayuki Tatsumi, Makiko Sampei, Kazuki Saito, Yuka Honda, Yuka Okazaki, Naoko Arata, Kanako Narumi, Naho Morisaki, Tomonori Ishikawa, Satoshi Narumi
    Obstetrics & Gynecology.2020; 136(4): 666.     CrossRef
  • Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study
    Kerina H Jones, Helen Daniels, Emma Squires, David V Ford
    Journal of Medical Internet Research.2019; 21(8): e14384.     CrossRef

Epidemiol Health : Epidemiology and Health