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2.
Online J Public Health Inform ; 16: e56237, 2024 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-39088253

RESUMO

BACKGROUND: Metadata describe and provide context for other data, playing a pivotal role in enabling findability, accessibility, interoperability, and reusability (FAIR) data principles. By providing comprehensive and machine-readable descriptions of digital resources, metadata empower both machines and human users to seamlessly discover, access, integrate, and reuse data or content across diverse platforms and applications. However, the limited accessibility and machine-interpretability of existing metadata for population health data hinder effective data discovery and reuse. OBJECTIVE: To address these challenges, we propose a comprehensive framework using standardized formats, vocabularies, and protocols to render population health data machine-readable, significantly enhancing their FAIRness and enabling seamless discovery, access, and integration across diverse platforms and research applications. METHODS: The framework implements a 3-stage approach. The first stage is Data Documentation Initiative (DDI) integration, which involves leveraging the DDI Codebook metadata and documentation of detailed information for data and associated assets, while ensuring transparency and comprehensiveness. The second stage is Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) standardization. In this stage, the data are harmonized and standardized into the OMOP CDM, facilitating unified analysis across heterogeneous data sets. The third stage involves the integration of Schema.org and JavaScript Object Notation for Linked Data (JSON-LD), in which machine-readable metadata are generated using Schema.org entities and embedded within the data using JSON-LD, boosting discoverability and comprehension for both machines and human users. We demonstrated the implementation of these 3 stages using the Integrated Disease Surveillance and Response (IDSR) data from Malawi and Kenya. RESULTS: The implementation of our framework significantly enhanced the FAIRness of population health data, resulting in improved discoverability through seamless integration with platforms such as Google Dataset Search. The adoption of standardized formats and protocols streamlined data accessibility and integration across various research environments, fostering collaboration and knowledge sharing. Additionally, the use of machine-interpretable metadata empowered researchers to efficiently reuse data for targeted analyses and insights, thereby maximizing the overall value of population health resources. The JSON-LD codes are accessible via a GitHub repository and the HTML code integrated with JSON-LD is available on the Implementation Network for Sharing Population Information from Research Entities website. CONCLUSIONS: The adoption of machine-readable metadata standards is essential for ensuring the FAIRness of population health data. By embracing these standards, organizations can enhance diverse resource visibility, accessibility, and utility, leading to a broader impact, particularly in low- and middle-income countries. Machine-readable metadata can accelerate research, improve health care decision-making, and ultimately promote better health outcomes for populations worldwide.

3.
Front Digit Health ; 6: 1329630, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38347885

RESUMO

Introduction: Population health data integration remains a critical challenge in low- and middle-income countries (LMIC), hindering the generation of actionable insights to inform policy and decision-making. This paper proposes a pan-African, Findable, Accessible, Interoperable, and Reusable (FAIR) research architecture and infrastructure named the INSPIRE datahub. This cloud-based Platform-as-a-Service (PaaS) and on-premises setup aims to enhance the discovery, integration, and analysis of clinical, population-based surveys, and other health data sources. Methods: The INSPIRE datahub, part of the Implementation Network for Sharing Population Information from Research Entities (INSPIRE), employs the Observational Health Data Sciences and Informatics (OHDSI) open-source stack of tools and the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) to harmonise data from African longitudinal population studies. Operating on Microsoft Azure and Amazon Web Services cloud platforms, and on on-premises servers, the architecture offers adaptability and scalability for other cloud providers and technology infrastructure. The OHDSI-based tools enable a comprehensive suite of services for data pipeline development, profiling, mapping, extraction, transformation, loading, documentation, anonymization, and analysis. Results: The INSPIRE datahub's "On-ramp" services facilitate the integration of data and metadata from diverse sources into the OMOP CDM. The datahub supports the implementation of OMOP CDM across data producers, harmonizing source data semantically with standard vocabularies and structurally conforming to OMOP table structures. Leveraging OHDSI tools, the datahub performs quality assessment and analysis of the transformed data. It ensures FAIR data by establishing metadata flows, capturing provenance throughout the ETL processes, and providing accessible metadata for potential users. The ETL provenance is documented in a machine- and human-readable Implementation Guide (IG), enhancing transparency and usability. Conclusion: The pan-African INSPIRE datahub presents a scalable and systematic solution for integrating health data in LMICs. By adhering to FAIR principles and leveraging established standards like OMOP CDM, this architecture addresses the current gap in generating evidence to support policy and decision-making for improving the well-being of LMIC populations. The federated research network provisions allow data producers to maintain control over their data, fostering collaboration while respecting data privacy and security concerns. A use-case demonstrated the pipeline using OHDSI and other open-source tools.

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