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Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa

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  • Jyothi Chabilall
  • Qunita Brown
  • Nezerith Cengiz
  • Keymanthri Moodley

Abstract

Innovative information-sharing techniques and rapid access to stored research data as scientific currency have proved highly beneficial in healthcare and health research. Yet, researchers often experience conflict between data sharing to promote health-related scientific knowledge for the common good and their personal academic advancement. There is a scarcity of studies exploring the perspectives of health researchers in sub-Saharan Africa (SSA) regarding the challenges with data sharing in the context of data-intensive research. The study began with a quantitative survey and research, after which the researchers engaged in a qualitative study. This qualitative cross-sectional baseline study reports on the challenges faced by health researchers, in terms of data sharing. In-depth interviews were conducted via Microsoft Teams between July 2022 and April 2023 with 16 health researchers from 16 different countries across SSA. We employed purposive and snowballing sampling techniques to invite participants via email. The recorded interviews were transcribed, coded and analysed thematically using ATLAS.ti. Five recurrent themes and several subthemes emerged related to (1) individual researcher concerns (fears regarding data sharing, publication and manuscript pressure), (2) structural issues impacting data sharing, (3) recognition in academia (scooping of research data, acknowledgement and research incentives) (4) ethical challenges experienced by health researchers in SSA (confidentiality and informed consent, commercialisation and benefit sharing) and (5) legal lacunae (gaps in laws and regulations). Significant discomfort about data sharing exists amongst health researchers in this sample of respondents from SSA, resulting in a reluctance to share data despite acknowledging the scientific benefits of such sharing. This discomfort is related to the lack of adequate guidelines and governance processes in the context of health research collaborations, both locally and internationally. Consequently, concerns about ethical and legal issues are increasing. Resources are needed in SSA to improve the quality, value and veracity of data–as these are ethical imperatives. Strengthening data governance via robust guidelines, legislation and appropriate data sharing agreements will increase trust amongst health researchers and data donors alike.Author summary: In our study, we explore the challenges faced by health researchers in sub-Saharan Africa (SSA) with respect to data sharing. While there are many benefits of sharing data, researchers from SSA remain hesitant to share in the context of data-intensive research. Using in-depth research interviews with 16 researchers from diverse countries in SSA, we identified five key barriers to effective data sharing. These barriers include inadequate guidelines and governance processes and fears around ethical and legal issues. If researchers are to reap the rewards of data as scientific currency, resources must be allocated to improve the quality, value and veracity of data. Improving data governance is critical to building trust amongst health researchers and data donors to facilitate the process of data sharing.

Suggested Citation

  • Jyothi Chabilall & Qunita Brown & Nezerith Cengiz & Keymanthri Moodley, 2024. "Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa," PLOS Digital Health, Public Library of Science, vol. 3(10), pages 1-24, October.
  • Handle: RePEc:plo:pdig00:0000635
    DOI: 10.1371/journal.pdig.0000635
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    References listed on IDEAS

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    1. Irene Jao & Francis Kombe & Salim Mwalukore & Susan Bull & Michael Parker & Dorcas Kamuya & Sassy Molyneux & Vicki Marsh, 2015. "Research Stakeholders’ Views on Benefits and Challenges for Public Health Research Data Sharing in Kenya: The Importance of Trust and Social Relations," PLOS ONE, Public Library of Science, vol. 10(9), pages 1-18, September.
    2. Rafael Aleixandre-Benavent & Antonio Vidal-Infer & Adolfo Alonso-Arroyo & Fernanda Peset & Antonia Ferrer Sapena, 2020. "Research Data Sharing in Spain: Exploring Determinants, Practices, and Perceptions," Data, MDPI, vol. 5(2), pages 1-14, March.
    3. Thijs Devriendt & Mahsa Shabani & Pascal Borry, 2023. "Reward systems for cohort data sharing: An interview study with funding agencies," PLOS ONE, Public Library of Science, vol. 18(3), pages 1-14, March.
    4. Carolina dos S Ribeiro & Martine Y van Roode & George B Haringhuizen & Marion P Koopmans & Eric Claassen & Linda H M van de Burgwal, 2018. "How ownership rights over microorganisms affect infectious disease control and innovation: A root-cause analysis of barriers to data sharing as experienced by key stakeholders," PLOS ONE, Public Library of Science, vol. 13(5), pages 1-19, May.
    5. Vikas Jaiman & Leonard Pernice & Visara Urovi, 2022. "User incentives for blockchain-based data sharing platforms," PLOS ONE, Public Library of Science, vol. 17(4), pages 1-22, April.
    6. Thijs Devriendt & Pascal Borry & Mahsa Shabani, 2021. "Factors that influence data sharing through data sharing platforms: A qualitative study on the views and experiences of cohort holders and platform developers," PLOS ONE, Public Library of Science, vol. 16(7), pages 1-14, July.
    7. Michael Anger & Christian Wendelborn & Eva C Winkler & Christoph Schickhardt, 2022. "Neither carrots nor sticks? Challenges surrounding data sharing from the perspective of research funding agencies—A qualitative expert interview study," PLOS ONE, Public Library of Science, vol. 17(9), pages 1-25, September.
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    9. repec:plo:pone00:0239283 is not listed on IDEAS
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