Synthesizing Clinical Data Warehouse Content for Enhanced External Collaboration: A Preliminary Proposal.

This paper introduces a novel approach aimed at enhancing the accessibility of clinical data warehouses (CDWs) for external users, particularly researchers and biomedical companies interested in developing and testing their solutions. The primary focus is on proposing a clinical data catalogue designed to elucidate the contents of CDWs, facilitating biomedical project launch and completion. The catalogue is designed to address three fundamental inquiries that external users may have regarding CDWs: "What data is available, how much data is present, and how was it generated?" Additionally, the paper showcases a prototype of the catalogue through a visualization example, utilizing data from the CDW of Rennes University Hospital.

EMIF Catalogue: A collaborative platform for sharing and reusing biomedical data.

OBJECTIVE: The collaboration and knowledge exchange between researchers are often hindered by the nonexistence of accurate information about which databases may support research studies. Even though a considerable amount of patient health information does exist, it is usually distributed and hidden in many institutions. The goal of this project is to provide, for any research community, a holistic view of biomedical datasets of interests, from which researchers can explore several distinct levels of granularity. METHODS: We developed a community-centered approach to facilitate data sharing while ensuring privacy. A dynamic schema allows exposing any metadata model about existing repositories. The framework was developed following a modular plugin-based architecture that facilitates the integration of internal and external tools. RESULTS: The EMIF Catalogue, a web platform for sharing and reusing biomedical data. Through this system, data custodians can publish and share different levels of information, while the researchers can search for databases that fulfill research requirements. CONCLUSIONS: The EMIF Catalogue currently fosters several distinct research communities, with different levels of data governance, combining, for instance, data available in pan-European EHR and Alzheimer cohorts. This portal is publicly available at https://emif-catalogue.eu.

A Meta-Data Manifesto: The Need for Global Health Meta-Data.

Administrative health data recorded for individual health episodes (such as births, deaths, physician visits, and hospital stays) are being widely used to study policy-relevant scientific questions about population health, health services, and quality of care. An increasing number of international health comparisons are undertaken with these data. An essential pre-requisite to such international comparative work is a detailed characterization of existing international health data resources, so that they can be more readily used for comparisons across counties. A major challenge to such international comparative work is the variability across countries in the extent, content, and validity of existing administrative data holdings. Recognizing this, we have undertaken an international proof of concept pilot compiling detailed data about data - i.e., a "meta-data catalogue" - for existing international administrative health data holdings. We describe the methodological process for collecting these meta-data, along with some general descriptive results for selected countries included in the pilot.