The Beacon Wiki: Mapping oncological information across the European Union
Abstract Background Accessing comprehensive oncological data is essential for efficient and quality healthcare delivery and research. However, obstacles, such as data fragmentation and privacy concerns which may hold back progress in this area, exist. The Cancer Care Beacon project addresses these b...
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BMC
2025-05-01
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| Series: | BMC Medical Informatics and Decision Making |
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| Online Access: | https://doi.org/10.1186/s12911-025-03015-6 |
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| author | Veronica Coppini Giulia Ferraris Maria Vittoria Ferrari Dario Monzani Margherita Dahò Elisa Fragale Roberto Grasso Ricardo Pietrobon Aline Machiavelli Lucas Teixeira Victor Galvão Gabriella Pravettoni |
| author_facet | Veronica Coppini Giulia Ferraris Maria Vittoria Ferrari Dario Monzani Margherita Dahò Elisa Fragale Roberto Grasso Ricardo Pietrobon Aline Machiavelli Lucas Teixeira Victor Galvão Gabriella Pravettoni |
| author_sort | Veronica Coppini |
| collection | DOAJ |
| description | Abstract Background Accessing comprehensive oncological data is essential for efficient and quality healthcare delivery and research. However, obstacles, such as data fragmentation and privacy concerns which may hold back progress in this area, exist. The Cancer Care Beacon project addresses these barriers consolidating oncological information across the 27 member states of the European Union (EU) with the goal of creating a Beacon wiki free data online repository. Methods The Cancer Care Beacon project involves thorough data collection from various sources, including hospital websites, PubMed, ClinicalTrials.gov, and national health institutions. The main focus of metadata retrieval is placed on descriptive details about data sources, thus warranting compliance with privacy regulations and ethical standards. In addition, manual examination and semi-automated methods are included in the process, enabling a registry of administrative databases, cancer registries, and other relevant databases. Results Project findings demonstrate the success in the realisation of a comprehensive repository of oncological data sources across the EU assisting informed decision-making regarding the selection and utilisation of resources. Still, challenges such as limited accessibility and low engagement from database providers persist. Conclusion The Beacon Wiki represents a significant step in addressing disparities in oncological data access and advancing cancer care and research in Europe. By providing comprehensive metadata on cancer-related data sources, Beacon Wiki empowers stakeholders and promotes collaboration in cancer care and research. Continuous efforts are needed to enhance data accessibility and engagement from database providers, ultimately improving data-driven decision-making and patient outcomes in the EU. Graphical Abstract |
| format | Article |
| id | doaj-art-40e54e4b384d4b6e83d5845ce5b3d87d |
| institution | DOAJ |
| issn | 1472-6947 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Informatics and Decision Making |
| spelling | doaj-art-40e54e4b384d4b6e83d5845ce5b3d87d2025-08-20T03:08:25ZengBMCBMC Medical Informatics and Decision Making1472-69472025-05-012511810.1186/s12911-025-03015-6The Beacon Wiki: Mapping oncological information across the European UnionVeronica Coppini0Giulia Ferraris1Maria Vittoria Ferrari2Dario Monzani3Margherita Dahò4Elisa Fragale5Roberto Grasso6Ricardo Pietrobon7Aline Machiavelli8Lucas Teixeira9Victor Galvão10Gabriella Pravettoni11Applied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCSApplied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCSApplied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCSApplied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCSDepartment of Psychology, Educational Science and Human Movement (SPPEFF), University of PalermoApplied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCSApplied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCSSporeData OÜ TallinSporeData OÜ TallinSporeData OÜ TallinSporeData OÜ TallinApplied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCSAbstract Background Accessing comprehensive oncological data is essential for efficient and quality healthcare delivery and research. However, obstacles, such as data fragmentation and privacy concerns which may hold back progress in this area, exist. The Cancer Care Beacon project addresses these barriers consolidating oncological information across the 27 member states of the European Union (EU) with the goal of creating a Beacon wiki free data online repository. Methods The Cancer Care Beacon project involves thorough data collection from various sources, including hospital websites, PubMed, ClinicalTrials.gov, and national health institutions. The main focus of metadata retrieval is placed on descriptive details about data sources, thus warranting compliance with privacy regulations and ethical standards. In addition, manual examination and semi-automated methods are included in the process, enabling a registry of administrative databases, cancer registries, and other relevant databases. Results Project findings demonstrate the success in the realisation of a comprehensive repository of oncological data sources across the EU assisting informed decision-making regarding the selection and utilisation of resources. Still, challenges such as limited accessibility and low engagement from database providers persist. Conclusion The Beacon Wiki represents a significant step in addressing disparities in oncological data access and advancing cancer care and research in Europe. By providing comprehensive metadata on cancer-related data sources, Beacon Wiki empowers stakeholders and promotes collaboration in cancer care and research. Continuous efforts are needed to enhance data accessibility and engagement from database providers, ultimately improving data-driven decision-making and patient outcomes in the EU. Graphical Abstracthttps://doi.org/10.1186/s12911-025-03015-6OncologyCancer registriesMetadataData repositoryCancer care disparities |
| spellingShingle | Veronica Coppini Giulia Ferraris Maria Vittoria Ferrari Dario Monzani Margherita Dahò Elisa Fragale Roberto Grasso Ricardo Pietrobon Aline Machiavelli Lucas Teixeira Victor Galvão Gabriella Pravettoni The Beacon Wiki: Mapping oncological information across the European Union BMC Medical Informatics and Decision Making Oncology Cancer registries Metadata Data repository Cancer care disparities |
| title | The Beacon Wiki: Mapping oncological information across the European Union |
| title_full | The Beacon Wiki: Mapping oncological information across the European Union |
| title_fullStr | The Beacon Wiki: Mapping oncological information across the European Union |
| title_full_unstemmed | The Beacon Wiki: Mapping oncological information across the European Union |
| title_short | The Beacon Wiki: Mapping oncological information across the European Union |
| title_sort | beacon wiki mapping oncological information across the european union |
| topic | Oncology Cancer registries Metadata Data repository Cancer care disparities |
| url | https://doi.org/10.1186/s12911-025-03015-6 |
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