Evidence map›Paper›PMID 42407058›Full record

ArticleJournal of medical Internet research2026

Health Data Quality Skill Gaps and Training Needs Among European Health Data Stakeholders: Cross-Sectional Survey.

Jens Declerck, Niina Eklund, Carlos Sáez, Peter Rijnbeek, Enrique Bernal-Delgado, Erik van Mulligen, Dipak Kalra

Abstract read
In one paragraph

Article in Journal of medical Internet research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. Review
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

7 authors.

Jens DeclerckThe European Institute for Innovation through Health Data, Ghent, Belgium.ORCID https://orcid.org/0000-0002-9743-9188
Niina EklundBBMRI-ERIC, Graz, Austria.ORCID https://orcid.org/0000-0001-5103-5914
Carlos SáezUniversitat Politècnica de València (UPV), Instituto Universitario de Tecnologías de la Información y Comunicaciones (ITACA), Biomedical Data Science Lab, Valencia, Spain.ORCID https://orcid.org/0000-0003-2678-8249
Peter RijnbeekErasmus University Medical Center, Rotterdam, The Netherlands.ORCID https://orcid.org/0000-0003-0621-1979
Enrique Bernal-DelgadoData Science for Health Services and Policy Research Institute for Health Sciences (IACS), Zaragoza, Spain.ORCID https://orcid.org/0000-0002-0961-3298
Erik van MulligenErasmus University Medical Center, Department of Medical Informatics, Rotterdam, The Netherlands.ORCID https://orcid.org/0000-0003-1377-9386
Dipak KalraThe European Institute for Innovation through Health Data, Ghent, Belgium.ORCID https://orcid.org/0000-0002-2998-9882

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe secondary use of health data is accelerating across Europe driven by growing demand for data-enabled research, innovation, and policymaking. The European Health Data Space (EHDS) establishes a regulatory framework to support this ecosystem, including Article 78, which mandates a data quality and utility labeling mechanism for datasets intended for reuse. Implementing this framework requires that data holders, data users, and health data access bodies possess sufficient skills, training, and organizational capacity to assess, document, and communicate data quality. However, little empirical evidence exists on whether European health data stakeholders currently possess these capabilities or how their needs differ across the 3 EHDS-defined roles.

objectiveThis study aimed to identify current skill gaps, training needs, and organizational readiness related to health data quality among European health data stakeholders within the context of the EHDS.

methodsA cross-sectional online survey was conducted between March 2024 and April 2024 using convenience sampling through the QUANTUM (Quality, Utility, and Maturity Measured; Developing a Data Quality and Utility Label for the European Health Data Space) consortium network, professional mailing lists, and health data communities. The survey targeted individuals involved in the secondary use of health data who identified as data holders, data users, or health data access bodies. The survey assessed 5 domains: stakeholder roles and data interaction, individual skills and experience, perceived challenges and skill gaps, organizational support and tools, and learning needs and preferences. Overall, 64 responses were collected from participants representing 44 institutions across 18 European countries.

resultsOverall, 82.8% (53/64; 95% CI 71.8%-90.1%) of respondents interacted with health data at least weekly, and 84.4% (54/64; 95% CI 73.6%-91.3%) rated data quality as moderately to absolutely critical for their work. Despite this, 87.5% (56/64; 95% CI 77.2%-93.8%) reported that poor data quality limited their effectiveness, with missing or inconsistent data identified as the most prevalent challenge. While 79.7% (51/64; 95% CI 67.4%-88.3%) reported prior experience with data quality tasks, key skill gaps were identified in applying data quality metrics, auditing and reporting, and metadata management. At the organizational level, only 15.6% (10/64; 95% CI 8.7%-26.6%) reported clearly defined data quality roles, and 68.8% (44/64; 95% CI 56.6%-78.8%) lacked a dedicated data quality manager or team.

conclusionsThis study provides an empirical assessment of data quality skills and organizational readiness across the 3 EHDS-defined stakeholder groups. The findings highlight that practical experience alone does not ensure data quality competence and that structural deficits, particularly unclear roles and limited governance, constrain effective data quality management. The results offer a role-specific, evidence-based road map for capacity-building efforts essential to the successful implementation of the EHDS Article 78 data quality and utility labeling framework. This evidence underscores the urgent need for coordinated capacity building to ensure successful EHDS data quality implementation.

Indexed as

Data AccuracyStakeholder ParticipationCross-Sectional StudiesEuropeHumansSurveys and Questionnairescapacity buildingdata holdersdata qualitydata quality labelingdata secondary usedata usersEuropean Health Data Spacehealth datahealth data access bodiesQUANTUM project

Identifiers

PMID42407058
PMCPMC13386117

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.