Evidence map›Paper›PMID 37430347›Full record

ArticleHealth research policy and systems2023

Health data hubs: an analysis of existing data governance features for research.

Celia Alvarez-Romero, Alicia Martínez-García, Máximo Bernabeu-Wittel, Carlos Luis Parra-Calderón

Abstract read
In one paragraph

Article in Health research policy and systems, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

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

  1. Pooled it
  2. Article
  3. Article
  4. Review
  5. Article
  6. Article
  7. Review
  8. 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

4 authors.

Celia Alvarez-RomeroComputational Health Informatics Group, Institute of Biomedicine of Seville, IBiS/Virgen del Rocío University Hospital/CSIC/University of Seville, Avenue Manuel Siurot S/N, 41013, Seville, Spain. celia.alvarez@juntadeandalucia.es.ORCID http://orcid.org/0000-0001-8647-9515
Alicia Martínez-GarcíaComputational Health Informatics Group, Institute of Biomedicine of Seville, IBiS/Virgen del Rocío University Hospital/CSIC/University of Seville, Avenue Manuel Siurot S/N, 41013, Seville, Spain.
Máximo Bernabeu-WittelInternal Medicine Department, Virgen del Rocío University Hospital, Seville, Spain.
Carlos Luis Parra-CalderónComputational Health Informatics Group, Institute of Biomedicine of Seville, IBiS/Virgen del Rocío University Hospital/CSIC/University of Seville, Avenue Manuel Siurot S/N, 41013, Seville, Spain.

Funding

Horizon 2020 research and innovation programme Coordination and Support Action HealthyCloud (Grant Agreement 965345)Instituto de Salud Carlos III IMPaCT-Data programme (code IMP/00019)
6 · The paper itself

Abstract

backgroundDigital transformation in healthcare and the growth of health data generation and collection are important challenges for the secondary use of healthcare records in the health research field. Likewise, due to the ethical and legal constraints for using sensitive data, understanding how health data are managed by dedicated infrastructures called data hubs is essential to facilitating data sharing and reuse.

methodsTo capture the different data governance behind health data hubs across Europe, a survey focused on analysing the feasibility of linking individual-level data between data collections and the generation of health data governance patterns was carried out. The target audience of this study was national, European, and global data hubs. In total, the designed survey was sent to a representative list of 99 health data hubs in January 2022.

resultsIn total, 41 survey responses received until June 2022 were analysed. Stratification methods were performed to cover the different levels of granularity identified in some data hubs' characteristics. Firstly, a general pattern of data governance for data hubs was defined. Afterward, specific profiles were defined, generating specific data governance patterns through the stratifications in terms of the kind of organization (centralized versus decentralized) and role (data controller or data processor) of the health data hub respondents.

conclusionsThe analysis of the responses from health data hub respondents across Europe provided a list of the most frequent aspects, which concluded with a set of specific best practices on data management and governance, taking into account the constraints of sensitive data. In summary, a data hub should work in a centralized way, providing a Data Processing Agreement and a formal procedure to identify data providers, as well as data quality control, data integrity and anonymization methods.

Indexed as

Data AccuracyData ManagementData CollectionEuropeHealth FacilitiesHumansGovernance modelsHealth data hubHealth data infrastructureHealth data managementPatterns of governanceSurvey

Identifiers

PMID37430347
PMCPMC10332005

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.