Evidence map›Paper›PMID 41189999›Full record

ArticleInternational journal of population data science2025

Improving transparency in data access processes: Developing best practice standards and promoting system-wide change through a competitive funding call.

Yemi Macaulay, Ester Bellavia, Rachel Brophy, Angela Coulter, Ben Glampson, Bethany Gilbert, Alan Holcroft, Erik Mayer, Edel McNamara, Katherine O'Sullivan and 7 more

Abstract read
In one paragraph

Article in International journal of population data science, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Yemi MacaulayHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
Ester BellaviaHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
Rachel BrophyHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
Angela CoulterOn behalf of the HDR UK Public Advisory Board.
Ben GlampsonDepartment of Surgery and Cancer, Imperial College London, W2 1NY, UK.
Bethany GilbertHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
Alan HolcroftOn behalf of the HDR UK Public Advisory Board.
Erik MayerDepartment of Surgery and Cancer, Imperial College London, W2 1NY, UK.
Edel McNamaraHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
Katherine O'SullivanResearch & Innovation IT, University of Sheffield, Sheffield S10 2FN.
Paola QuattroniHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
David SeymourHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
Yvonne SiloveHealthcare Quality Improvement Partnership, London, EC1V 2NX.
Doreen TemboHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
Andrew D MorrisHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
Cassie SmithHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
Andy BoydHealth Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: Transparency in the use of data for research benefits the public and researchers by fostering trust and enabling efficient data sharing. Public support for access to their data for research depends on robust data security, the absence of conflicting interests, and a clear demonstration of public benefit, all of which must be evident through transparent practices. A lack of clarity in data access processes can delay research, highlighting the need for clear and streamlined approval procedures. To maintain what is often referred to as a 'social license to operate', organisations must meet and uphold societal expectations, with transparency being a key dimension of that responsibility. Objective: To develop and foster adoption of a set of transparency standards for the data science community, supporting trustworthy and streamlined data use for health and socio-economic research and planning. Methods: A multi-stakeholder deliberation was undertaken, informed by two reviews of existing data access procedures across participating organisations. Stakeholders included healthcare and research organisations, data custodians, regulators, industry representatives, academic experts, and members of the public. Results: The review and deliberation identified missed opportunities to inform and involve the public in data access procedures, along with inconsistencies in data access processes and supporting materials across the organisations. In response, we developed the Transparency Standards, comprising 28 recommended actions grouped into four themes: provision of clear data access guidance; clear website navigation designed to meet the needs of public and research users; regular review and iterative improvement of processes; and reporting of data access outcomes and information security findings. A targeted funding call facilitated the adoption of standards in 19 organisations, resulting in reusable transparency materials and transferable knowledge to support wider implementation. Conclusion: The Transparency Standards support data custodians in strengthening openness and accountability in data access processes, helping to build public trust while simplifying procedures for researchers. Their broad adoption demonstrates a shared commitment to the ethical use of data. However, varying levels of implementation point to the need for continued investment to sustain progress and respond to public and researcher expectations.

Indexed as

Access to InformationInformation DisseminationHumansallianceCAREdata accessdata safe haven [DSH]FAIRfive safesPan-UK data governance steering grouppatient and public involvement and engagement [PPIE]secure data environment [SDE]social licencetransparencytrusted research environment [TRE]UK health data research alliance

Identifiers

PMID41189999
PMCPMC12581233

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.