You are here

  • Home
  • Archive
  • Volume 8, Issue 3
  • What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives

Article Text

Article menu
Original research
What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
  1. Natalia Evertsz1,
  2. Susan Bull2,3,
  3. Bridget Pratt4
  1. 1 Royal Melbourne Hospital, Melbourne, Victoria, Australia
  2. 2 Nuffield Department of Population Health, University of Oxford, Oxford, UK
  3. 3 Department of Psychological Medicine, The University of Auckland, Auckland, New Zealand
  4. 4 Queensland Bioethics Centre, Australian Catholic University, Banyo, Queensland, Australia
  1. Correspondence to Dr Bridget Pratt; bridget.pratt{at}acu.edu.au

Abstract

Introduction Despite growing consensus on the need for equitable data sharing, there has been very limited discussion about what this should entail in practice. As a matter of procedural fairness and epistemic justice, the perspectives of low-income and middle-income country (LMIC) stakeholders must inform concepts of equitable health research data sharing. This paper investigates published perspectives in relation to how equitable data sharing in global health research should be understood.

Methods We undertook a scoping review (2015 onwards) of the literature on LMIC stakeholders’ experiences and perspectives of data sharing in global health research and thematically analysed the 26 articles included in the review.

Results We report LMIC stakeholders’ published views on how current data sharing mandates may exacerbate inequities, what structural changes are required in order to create an environment conducive to equitable data sharing and what should comprise equitable data sharing in global health research.

Conclusions In light of our findings, we conclude that data sharing under existing mandates to share data (with minimal restrictions) risks perpetuating a neocolonial dynamic. To achieve equitable data sharing, adopting best practices in data sharing is necessary but insufficient. Structural inequalities in global health research must also be addressed. It is thus imperative that the structural changes needed to ensure equitable data sharing are incorporated into the broader dialogue on global health research.

  • Health policies and all other topics
  • Review

Data availability statement

Data are available upon reasonable request. Data are available upon reasonable request from the corresponding author.

https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

https://doi.org/10.1136/bmjgh-2022-010157

Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

    Data availability statement

    Data are available upon reasonable request. Data are available upon reasonable request from the corresponding author.

    View Full Text

    Supplementary materials

    Footnotes

    • Handling editor Senjuti Saha

    • Contributors BP and NE conceived of the study and its methods. NE collected and analysed the data, under the supervision of BP and with assistance from SB. NE wrote the first draft of the manuscript. BP and SB revised the work critically for intellectual content. All authors gave final approval of the version to be published. BP accepts full responsibility for the work and/or the conduct of the study, had access to the data, and controlled the decision to publish.

    • Funding This research was partially supported by a Wellcome Trust Strategic Award (096527) and a Department for International Development/Wellcome—Epidemic Preparedness—Coronavirus Grant (221559/Z/20/Z). For the purpose of open access, SB has applied a CC BY public copyright licence to any Author Accepted Manuscript version arising from this submission. BP was supported by a University of Melbourne R Douglas Wright Research Fellowship.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.