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Improving transparency in data access processes: Developing best practice standards and promoting system-wide change
Yemi Macaulay1,2, Ester Bellavia1,2, Rachel Brophy1
1Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
International Journal of Population Data Science
|November 5, 2025
Summary
Developing transparency standards for data use builds public trust and streamlines research processes. These standards promote accountability and ethical data sharing, ensuring societal expectations are met for research data access.
Area of Science:
- Data Science
- Health Research
- Socio-economic Research
Background:
- Public trust in research data use hinges on transparency, data security, and clear public benefit.
- Lack of clarity in data access processes can impede research progress and delay crucial findings.
- Maintaining a 'social license to operate' requires organizations to meet societal expectations through transparent practices.
Purpose of the Study:
- To establish and promote the adoption of transparency standards within the data science community.
- To support trustworthy and efficient data utilization for health and socio-economic research.
- To enhance public and researcher confidence in data access protocols.
Main Methods:
- A multi-stakeholder deliberation process was conducted.
- Two reviews of existing data access procedures across participating organizations informed the deliberation.
- Stakeholders included representatives from healthcare, research, regulatory bodies, industry, academia, and the public.
Main Results:
- Identified inconsistencies in data access processes and inadequate public engagement.
- Developed 28 "Transparency Standards" across four themes: clear guidance, user-friendly navigation, process improvement, and outcome reporting.
- Facilitated adoption in 19 organizations, generating reusable materials and transferable knowledge.
Conclusions:
- The Transparency Standards enhance data custodian accountability and public trust.
- Standards simplify data access for researchers and promote ethical data use.
- Continued investment is needed to ensure sustained progress and meet evolving expectations.
Keywords:
CAREFAIRPan-UK data governance steering groupUK health data research alliancealliancedata accessdata safe haven [DSH]five safespatient and public involvement and engagement [PPIE]secure data environment [SDE]social licencetransparencytrusted research environment [TRE]More Related Videos
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