Health Data Hub ; plateforme des données de santé en France, application à l’oncologie radiothérapie

Combes, Sarah; Bacry, Emmanuel; Fontbonne, C.

doi:10.1016/j.canrad.2020.07.003

Cited by 6 publications

(4 citation statements)

References 1 publication

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The study included all consecutive patients of over 18 years admitted to participating ICUs between February 25 and December 31, 2020, who were treated with iNO for at least 1 h for laboratory-confirmed COVID-19 ARDS [ 16 ] and did not object to the use of their personal health data. The study protocol was submitted to Health Data Hub, the regulatory body in charge of validating projects carried out on existing databases in France [ 17 ], in April 2021.…”

Section: Methodsmentioning

confidence: 99%

Inhaled nitric oxide in patients with acute respiratory distress syndrome caused by COVID-19: treatment modalities, clinical response, and outcomes

Mekontso-Dessap

Papazian

Schaller

et al. 2023

Ann. Intensive Care

View full text Add to dashboard Cite

Background Inhaled nitric oxide (iNO) has been widely used in patients with COVID-19-related acute respiratory distress syndrome (C-ARDS), though its physiological effects and outcome are debated in this setting. The objective of this cohort study was to describe the modalities of iNO use, clinical response, and outcomes in a large cohort of C-ARDS patients. Methods Multicentre, retrospective cohort study conducted in France. Results From end February to December 2020, 300 patients (22.3% female) were included, 84.5% were overweight and 69.0% had at least one comorbidity. At ICU admission, their median (IQR) age, SAPS II, and SOFA score were 66 (57–72) years, 37 (29–48), and 5 (3–8), respectively. Patients were all ventilated according to a protective ventilation strategy, and 68% were prone positioned before iNO initiation. At iNO initiation, 2%, 37%, and 61% of patients had mild, moderate, and severe ARDS, respectively. The median duration of iNO treatment was 2.8 (1.1–5.5) days with a median dosage of 10 (7–13) ppm at initiation. Responders (PaO2/FiO2 ratio improving by 20% or more) represented 45.7% of patients at 6 h from iNO initiation. The severity of ARDS was the only predictive factor associated with iNO response. Among all evaluable patients, the crude mortality was not significantly different between responders at 6 h and their counterparts. Of the 62 patients with refractory ARDS (who fulfilled extracorporeal membrane oxygenation criteria before iNO initiation), 32 (51.6%) no longer fulfilled these criteria after 6 h of iNO. The latter showed significantly lower mortality than the other half (who remained ECMO eligible), including after confounder adjustment (adjusted OR: 0.23, 95% CI 0.06, 0.89, p = 0.03). Conclusions Our study reports the benefits of iNO in improving arterial oxygenation in C-ARDS patients. This improvement seems more relevant in the most severe cases. In patients with ECMO criteria, an iNO-driven improvement in gas exchange was associated with better survival. These results must be confirmed in well-designed prospective studies.

show abstract

Section: Methodsmentioning

confidence: 99%

Inhaled nitric oxide in patients with acute respiratory distress syndrome caused by COVID-19: treatment modalities, clinical response, and outcomes

Mekontso-Dessap

Papazian

Schaller

et al. 2023

Ann. Intensive Care

View full text Add to dashboard Cite

show abstract

“…Efforts need to be made to improve the health scientific community's understanding of data linkage methodology and the interpretation of linked data. The recent creation of the Health Data Hub [61], enabled by the law of July 24, 2019, on the organization and transformation of the French health system [21] should improve this. Its objective is to enable the implementation of authorized innovative projects using nonnominal data via a state-of-the-art secure technological platform [21].…”

Section: Principal Findingsmentioning

confidence: 99%

“…The recent creation of the Health Data Hub [61], enabled by the law of July 24, 2019, on the organization and transformation of the French health system [21] should improve this. Its objective is to enable the implementation of authorized innovative projects using nonnominal data via a state-of-the-art secure technological platform [21]. Once all the regulatory authorizations relating to data security have been obtained, the Health Data Hub platform would centralize databases from patient registries, cohorts, or electronic medical records and allow the linkage of consolidated databases with SNDS data [21].…”

Section: Principal Findingsmentioning

confidence: 99%

“…The use of a common unique identifier to directly link personal data is often limited because it does not exist, is not regulatory available, or contains errors [19]. The national individual identifier "NIR" in French MADs is highly protected by privacy rules, leading to complex and lengthy formalities, which discourage potential applicants from using it [13,14,20,21]. Linkage with a set of indirect key identifiers has therefore been developed with deterministic and probabilistic approaches [2,4,22].…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Development of Indirect Health Data Linkage on Health Product Use and Care Trajectories in France: Systematic Review

Ranchon¹,

Chanoine²,

Lambert-Lacroix³

et al. 2023

J Med Internet Res

View full text Add to dashboard Cite

Background European national disparities in the integration of data linkage (ie, being able to match patient data between databases) into routine public health activities were recently highlighted. In France, the claims database covers almost the whole population from birth to death, offering a great research potential for data linkage. As the use of a common unique identifier to directly link personal data is often limited, linkage with a set of indirect key identifiers has been developed, which is associated with the linkage quality challenge to minimize errors in linked data. Objective The aim of this systematic review is to analyze the type and quality of research publications on indirect data linkage on health product use and care trajectories in France. Methods A comprehensive search for all papers published in PubMed/Medline and Embase databases up to December 31, 2022, involving linked French database focusing on health products use or care trajectories was realized. Only studies based on the use of indirect identifiers were included (ie, without a unique personal identifier available to easily link the databases). A descriptive analysis of data linkage with quality indicators and adherence to the Bohensky framework for evaluating data linkage studies was also realized. Results In total, 16 papers were selected. Data linkage was performed at the national level in 7 (43.8%) cases or at the local level in 9 (56.2%) studies. The number of patients included in the different databases and resulting from data linkage varied greatly, respectively, from 713 to 75,000 patients and from 210 to 31,000 linked patients. The diseases studied were mainly chronic diseases and infections. The objectives of the data linkage were multiple: to estimate the risk of adverse drug reactions (ADRs; n=6, 37.5%), to reconstruct the patient’s care trajectory (n=5, 31.3%), to describe therapeutic uses (n=2, 12.5%), to evaluate the benefits of treatments (n=2, 12.5%), and to evaluate treatment adherence (n=1, 6.3%). Registries are the most frequently linked databases with French claims data. No studies have looked at linking with a hospital data warehouse, a clinical trial database, or patient self-reported databases. The linkage approach was deterministic in 7 (43.8%) studies, probabilistic in 4 (25.0%) studies, and not specified in 5 (31.3%) studies. The linkage rate was mainly from 80% to 90% (reported in 11/15, 73.3%, studies). Adherence to the Bohensky framework for evaluating data linkage studies showed that the description of the source databases for the linkage was always performed but that the completion rate and accuracy of the variables to be linked were not systematically described. Conclusions This review highlights the growing interest in health data linkage in France. Nevertheless, regulatory, technical, and human constraints remain major obstacles to their deployment. The volume, variety, and validity of the data represent a real challenge, and advanced expertise and skills in statistical analysis and artificial intelligence are required to treat these big data.

show abstract

The Regulation of Public Data

2023

Digital Transformation and Public Policies

View full text Add to dashboard Cite

Health Data Hub ; plateforme des données de santé en France, application à l’oncologie radiothérapie

Cited by 6 publications

References 1 publication

Inhaled nitric oxide in patients with acute respiratory distress syndrome caused by COVID-19: treatment modalities, clinical response, and outcomes

Inhaled nitric oxide in patients with acute respiratory distress syndrome caused by COVID-19: treatment modalities, clinical response, and outcomes

Development of Indirect Health Data Linkage on Health Product Use and Care Trajectories in France: Systematic Review

The Regulation of Public Data

Contact Info

Product

Resources

About