Trust as moral currency: Perspectives of health researchers in sub-Saharan Africa on strategies to promote equitable data sharing

Abstract

Groundbreaking data-sharing techniques and quick access to stored research data from the African continent are highly beneficial to create diverse unbiased datasets to inform digital health technologies and artificial intelligence in healthcare. Yet health researchers in sub-Saharan Africa (SSA) experience individual and collective challenges that render them cautious and even hesitant to share data despite acknowledging the public health benefits of sharing. This qualitative study reports on the perspectives of health researchers regarding strategies to mitigate these challenges. In-depth interviews were conducted via Microsoft Teams with 16 researchers from 16 different countries across SSA between July 2022 and April 2023. Purposive and snowball sampling techniques were used to invite participants via email. Recorded interviews were transcribed, cleaned, coded and managed through Atlas.ti.22. Thematic Analysis was used to analyse the data. Three recurrent themes and several subthemes emerged around strategies to improve governance of data sharing. The main themes identified were (1) Strategies for change at a policy level: guideline development, (2) Strengthening data governance to improve data quality and (3) Reciprocity: towards equitable data sharing. Building trust is central to the promotion of data sharing amongst researchers on the African continent and with global partners. This can be achieved by enhancing research integrity and strengthening micro and macro level governance. Substantial resources are required from funders and governments to enhance data governance practices, to improve data literacy and to enhance data quality. High quality data from Africa will afford diversity to global data sets, reducing bias in algorithms built for artificial intelligence technologies in healthcare. Engagement with multiple stakeholders including researchers and research communities is necessary to establish an equitable data sharing approach based on reciprocity and mutual benefit.

Author summary

In our study, we explore the challenges and potential solutions for data sharing among health researchers in sub-Saharan Africa (SSA). While data sharing can significantly enhance the development of digital health technologies and artificial intelligence by providing diverse and unbiased datasets, many researchers in SSA are cautious about sharing their data. Through in-depth interviews with 16 researchers from different countries in SSA, we identified key strategies to overcome these challenges. Our findings highlight three main areas: the need for policy changes to develop clear guidelines, the importance of strengthening data governance to improve data quality, and the value of reciprocity to ensure equitable data sharing. Trust is a critical component in promoting data sharing, which can be built by enhancing research integrity and governance at both micro and macro levels. High-quality data from Africa can contribute to more diverse global datasets, helping to reduce bias in healthcare algorithms.