What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
Bibliographic Data
| ID | 21879478 |
|---|---|
| Authors | Natalia Evertsz (The Royal Melbourne Hospital), Susan Bull (0000-0002-1779-528X, University of Auckland), Boriana Pratt (0000-0002-4934-3560, Australian Catholic University, corresponding author) |
| Year | 2023 |
| Volume | 8 |
| Issue | 3 |
| Pages | e010157 |
| Publication date | 2023-03-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | BMJ Global Health (JOURNAL) |
| Journal identifiers | ISSN: 2059-7908 • E-ISSN: 2059-7908 |
| Publisher | BMJ (PUBLISHER • GB) |
| DOI | 10.1136/bmjgh-2022-010157 |
| PMID | 36977523 |
| OpenAlex | W4361209207 |
| Language | EN |
| Citations received | 12 |
| References cited | 63 |
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
Business · Data sharing · Economic growth · Economics · Global health · Health care · Health equity · Inequality · Political science · Public relations · Data Analysis and Archiving · Ethics in Clinical Research · Medicine · Research Data Management Practices
Sustainment and sustainability of the delegated management model of urban water service delivery
How Should Meaningful Evidence Be Generated From Datasets
Mapping inequities in global vaccine sentiment research
How do global health research actors conceptualise inclusion in response to decolonisation calls? A scoping review
Beyond high-level recommendations and rule books
Towards equitable partnerships in global health research
Collective action for responsible global health data sharing and use
The PHA4GE Microbial Data-Sharing Accord
Global Surgery as an emerging discipline
Factors affecting the collection of clinical data for quality improvement at a tertiary centre in Papua New Guinea
Share
Opportunities for promoting open data in the Caribbean through biobanks
Epistemic injustice in academic global health
Good and Bad Research Collaborations
Addressing power asymmetries in global health
'Scoping the scope' of a cochrane review
Using the framework method for the analysis of qualitative data in multi-disciplinary health research
Where is knowledge from the global South? An account of epistemic justice for a global bioethics
Decolonising global health
“You cannot collect data using your own resources and put It on open access”
‘It is an entrustment’
Ethical principles for promoting health research data sharing with sub‐Saharan Africa
Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
Overcoming structural barriers to sharing power with communities in global health research priority-setting
Sharing power in global health research
Is Not Much To You’
Data sharing in low-resourced research environments
Sweat, Skepticism, and Uncharted Territory
Trust, Respect, and Reciprocity
Sharing Research Data to Improve Public Health
Linking Participatory Action Research on Health Systems to Justice in Global Health
Perceived Benefits, Harms, and Views About How to Share Data Responsibly
Developing Ethical Practices for Public Health Research Data Sharing in South Africa
Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya
Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research
Using thematic analysis in psychology
Scoping studies
Three Approaches to Qualitative Content Analysis
| Citations per year | 6 |
|---|---|
| Citation span | 2024 - 2026 (3) |
| Highly cited | No |