Evidence map›Paper›PMID 37802544›Full record

SynthesisBMJ global health2023

Multiple modes of data sharing can facilitate secondary use of sensitive health data for research.

Tsaone Tamuhla, Eddie T Lulamba, Themba Mutemaringa, Nicki Tiffin

Abstract readMeta-AnalysisReview
In one paragraph

Synthesis in BMJ global health, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed, 1 pooled it
–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

13 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Review
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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

4 authors.

Tsaone TamuhlaSouth African National Bioinformatics Institute, University of the Western Cape, Bellville, South Africa.
Eddie T LulambaSouth African National Bioinformatics Institute, University of the Western Cape, Bellville, South Africa.
Themba MutemaringaProvincial Health Data Centre, Health Intelligence Directorate, Western Cape Department of Health and Wellness, Cape Town, Western Cape, South Africa.
Nicki TiffinSouth African National Bioinformatics Institute, University of the Western Cape, Bellville, South Africa ntiffin@sanbi.ac.za.ORCID 0000-0001-5083-2735

Funding

Medical Research Council MC_ PC_22007Medical Research Council MC_PC_22007
6 · The paper itself

Abstract

Evidence-based healthcare relies on health data from diverse sources to inform decision-making across different domains, including disease prevention, aetiology, diagnostics, therapeutics and prognosis. Increasing volumes of highly granular data provide opportunities to leverage the evidence base, with growing recognition that health data are highly sensitive and onward research use may create privacy issues for individuals providing data. Concerns are heightened for data without explicit informed consent for secondary research use. Additionally, researchers-especially from under-resourced environments and the global South-may wish to participate in onward analysis of resources they collected or retain oversight of onward use to ensure ethical constraints are respected. Different data-sharing approaches may be adopted according to data sensitivity and secondary use restrictions, moving beyond the traditional Open Access model of unidirectional data transfer from generator to secondary user. We describe collaborative data sharing, facilitating research by combining datasets and undertaking meta-analysis involving collaborating partners; federated data analysis, where partners undertake synchronous, harmonised analyses on their independent datasets and then combine their results in a coauthored report, and trusted research environments where data are analysed in a controlled environment and only aggregate results are exported. We review how deidentification and anonymisation methods, including data perturbation, can reduce risks specifically associated with health data secondary use. In addition, we present an innovative modularised approach for building data sharing agreements incorporating a more nuanced approach to data sharing to protect privacy, and provide a framework for building the agreements for each of these data-sharing scenarios.

Indexed as

Informed ConsentPrivacyDelivery of Health CareHumansInformation DisseminationResearch DesignHealth policies and all other topicsPublic Health

Identifiers

PMID37802544
PMCPMC10565310

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.