ArticleHealth research policy and systems2024
European health regulations reduce registry-based research.
Article in Health research policy and systems, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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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.
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.
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Who cites it
6 citing papers in PubMed.
- Beyond Traditional Risk Scores: Artificial Intelligence in Coronary Plaque Characterization and Personalized Atherosclerosis Management.Journal of cardiovascular development and disease · 2026Review
- Finland's Falling Birth Rate Prompts Study of Neonatal Outcomes in Secondary-Level Delivery Units.Acta paediatrica (Oslo, Norway : 1992) · 2025Article
- User journeys in cross-European secondary use of health data: insights ahead of the European Health Data Space.European journal of public health · 2025Article
- Delivery unit volume and neonatal mortality - A nationwide register study in Finland from 2008 to 2023.European journal of pediatrics · 2025Article
- Neonatal outcomes in twin pregnancies in Finland from 2008 to 2023.European journal of pediatrics · 2025Article
- Forecasting Mortality Associated Emergency Department Crowding with LightGBM and Time Series Data.Journal of medical systems · 2025Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe European Health Data Space (EHDS) regulation has been proposed to harmonize health data processing. Given its parallels with the Act on Secondary Use of Health and Social Data (Secondary Use Act) implemented in Finland in 2020, this study examines the consequences of heightened privacy constraints on registry-based medical research.
methodsWe collected study permit counts approved by university hospitals in Finland in 2014-2023 and the data authority Findata in 2020‒2023. The changes in the study permit counts were analysed before and after the implementation of the General Data Protection Regulation (GDPR) and the Secondary Use Act. By fitting a linear regression model, we estimated the deficit in study counts following the Secondary Use Act.
resultsBetween 2020 and 2023, a median of 5.5% fewer data permits were approved annually by Finnish university hospitals. On the basis of linear regression modelling, we estimated a reduction of 46.9% in new data permits nationally in 2023 compared with the expected count. Similar changes were neither observed after the implementation of the GDPR nor in permit counts of other medical research types, confirming that the deficit was caused by the Secondary Use Act.
conclusionsThis study highlights concerns related to data privacy laws for registry-based medical research and future patient care.
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Registered trials
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.