[go: up one dir, main page]
IDEAS home Printed from https://ideas.repec.org/p/ehl/lserod/122811.html
   My bibliography  Save this paper

Data challenges for international health emergencies: lessons learned from ten international COVID-19 driver projects

Author

Listed:
  • Boylan, Sally
  • Arsenault, Catherine
  • Barreto, Marcos
  • Bozza, Fernando A
  • Fonseca, Adalton
  • Forde, Eoghan
  • Hookham, Lauren
  • Humphreys, Georgina S
  • Ichihara, Maria Yury
  • Le doare, Kirsty
  • Liu, Xiao Fan
  • McNamara, Edel
  • Mugunga, Jean Claude
  • Oliveira, Juliane F
  • Ouma, Joseph
  • Postlethwaite, Neil
  • Retford, Matthew
  • Reyes, Luis Felipe
  • Morris, Andrew D
  • Wozencraft, Anne
Abstract
The COVID-19 pandemic highlighted the importance of international data sharing and access to improve health outcomes for all. The International COVID-19 Data Alliance (ICODA) programme enabled 12 exemplar or driver projects to use existing health-related data to address major research questions relating to the pandemic, and developed data science approaches that helped each research team to overcome challenges, accelerate the data research cycle, and produce rapid insights and outputs. These approaches also sought to address inequity in data access and use, test approaches to ethical health data use, and make summary datasets and outputs accessible to a wider group of researchers. This Health Policy paper focuses on the challenges and lessons learned from ten of the ICODA driver projects, involving researchers from 19 countries and a range of health-related datasets. The ICODA programme reviewed the time taken for each project to complete stages of the health data research cycle and identified common challenges in areas such as data sharing agreements and data curation. Solutions included provision of standard data sharing templates, additional data curation expertise at an early stage, and a trusted research environment that facilitated data sharing across national boundaries and reduced risk. These approaches enabled the driver projects to rapidly produce research outputs, including publications, shared code, dashboards, and innovative resources, which can all be accessed and used by other research teams to address global health challenges.

Suggested Citation

  • Boylan, Sally & Arsenault, Catherine & Barreto, Marcos & Bozza, Fernando A & Fonseca, Adalton & Forde, Eoghan & Hookham, Lauren & Humphreys, Georgina S & Ichihara, Maria Yury & Le doare, Kirsty & Liu,, 2024. "Data challenges for international health emergencies: lessons learned from ten international COVID-19 driver projects," LSE Research Online Documents on Economics 122811, London School of Economics and Political Science, LSE Library.
    • Handle: RePEc:ehl:lserod:122811
    as

    Download full text from publisher

    File URL: http://eprints.lse.ac.uk/122811/
    File Function: Open access version.
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Tanvi Desai & Felix Ritchie & Richard Welpton, 2016. "Five Safes: designing data access for research," Working Papers 20161601, Department of Accounting, Economics and Finance, Bristol Business School, University of the West of England, Bristol.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. David H. Schiller & Johanna Eberle & Daniel Fuß & Jan Goebel & Jörg Heining & Tatjana Mika & Dana Müller & Frank Röder & Michael Stegmann & Karsten Stephan, 2017. "Standards des sicheren Datenzugangs in den Sozial- und Wirtschaftswissenschaften - Überblick über verschiedene Remote-Access-Verfahren," RatSWD Working Papers 261, German Data Forum (RatSWD).
    2. Peng Zhang & Maged N. Kamel Boulos, 2022. "Privacy-by-Design Environments for Large-Scale Health Research and Federated Learning from Data," IJERPH, MDPI, vol. 19(19), pages 1-13, September.
    3. Ian Foster, 2018. "Research Infrastructure for the Safe Analysis of Sensitive Data," The ANNALS of the American Academy of Political and Social Science, , vol. 675(1), pages 102-120, January.
    4. Kalinda E. Griffiths & Jessica Blain & Claire M. Vajdic & Louisa Jorm, 2021. "Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review," IJERPH, MDPI, vol. 18(19), pages 1-22, September.
    5. Sallie-Anne Pearson & Nicole Pratt & Juliana de Oliveira Costa & Helga Zoega & Tracey-Lea Laba & Christopher Etherton-Beer & Frank M. Sanfilippo & Alice Morgan & Lisa Kalisch Ellett & Claudia Bruno & , 2021. "Generating Real-World Evidence on the Quality Use, Benefits and Safety of Medicines in Australia: History, Challenges and a Roadmap for the Future," IJERPH, MDPI, vol. 18(24), pages 1-20, December.

    More about this item

    Keywords

    ICODA; an initiative funded by the Gates Foundation (INV-017293); the Minderoo Foundation; supported by Microsoft’s AI for Good Research Laboratory; and convened by Health Data Research UK. Aridhia Informatics was funded by the Gates Foundation (INV-021793);
    All these keywords.

    JEL classification:

    • C1 - Mathematical and Quantitative Methods - - Econometric and Statistical Methods and Methodology: General

    NEP fields

    This paper has been announced in the following NEP Reports:

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:ehl:lserod:122811. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: LSERO Manager (email available below). General contact details of provider: https://edirc.repec.org/data/lsepsuk.html .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.