Integration and interoperability of consent, access rules and ontologies for eHealth and genomic information

The effective management of consent and access rules is a fundamental challenge in eHealth and genomic research, where interoperability among diverse data systems and standards is critical. This master's thesis, titled "Integration and interoperability of consent, access rules, and ontolog...

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Detalhes bibliográficos
Autor: Kazare, Esther Mahuza
Formato: tesis de maestría
Fecha de publicación:2024
País:España
Recursos:Universitat Politècnica de Catalunya (UPC)
Repositorio:UPCommons. Portal del coneixement obert de la UPC
Idioma:inglés
OAI Identifier:oai:upcommons.upc.edu:2117/417090
Acesso em linha:https://hdl.handle.net/2117/417090
Access Level:acceso abierto
Palavra-chave:Ontologies (Information retrieval)
Genomics
Ontologies (Informàtica)
Genòmica
Àrees temàtiques de la UPC::Informàtica::Sistemes d'informació
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spelling Integration and interoperability of consent, access rules and ontologies for eHealth and genomic informationKazare, Esther MahuzaOntologies (Information retrieval)GenomicsOntologies (Informàtica)GenòmicaÀrees temàtiques de la UPC::Informàtica::Sistemes d'informacióThe effective management of consent and access rules is a fundamental challenge in eHealth and genomic research, where interoperability among diverse data systems and standards is critical. This master's thesis, titled "Integration and interoperability of consent, access rules, and ontologies for eHealth and genomic information," seeks to address these challenges by examining and enhancing the integration of various health information standards and specifications such as FHIR, GA4GH, and ODRL. The report documents the initial progress made, including the development of a structured GA4GH consent format in JSON and the application of the GA4GH Machine Readable Consent Toolkit for transforming policy clauses into machine-readable formats. These advancements are part of a broader effort to assess how well current standards facilitate or hinder interoperability and to propose solutions for more seamless integration. Preliminary findings indicate significant gaps in the current frameworks, particularly in their ability to communicate and enforce consent across systems and borders. The work conducted so far highlights the potential for standardized, machine-readable consent formats to enhance data sharing and protection practices. The forthcoming phases of the thesis will delve deeper into these issues, aiming to propose robust frameworks that can be universally adopted to improve the consistency and efficiency of data handling in global health and genomic research. This research is expected to contribute valuable insights and practical solutions to the ongoing challenges of managing sensitive health information in a technologically interconnected world.Universitat Politècnica de CatalunyaDelgado Mercè, Jaime20242024-06-2720242024-11-06master thesishttp://purl.org/coar/resource_type/c_bdccNAhttp://purl.org/coar/version/c_be7fb7dd8ff6fe43info:eu-repo/semantics/masterThesisapplication/pdfhttps://hdl.handle.net/2117/417090reponame:UPCommons. Portal del coneixement obert de la UPCinstname:Universitat Politècnica de Catalunya (UPC)Inglésengopen accesshttp://purl.org/coar/access_right/c_abf2info:eu-repo/semantics/openAccessoai:upcommons.upc.edu:2117/4170902026-05-27T15:37:01Z
dc.title.none.fl_str_mv Integration and interoperability of consent, access rules and ontologies for eHealth and genomic information
title Integration and interoperability of consent, access rules and ontologies for eHealth and genomic information
spellingShingle Integration and interoperability of consent, access rules and ontologies for eHealth and genomic information
Kazare, Esther Mahuza
Ontologies (Information retrieval)
Genomics
Ontologies (Informàtica)
Genòmica
Àrees temàtiques de la UPC::Informàtica::Sistemes d'informació
title_short Integration and interoperability of consent, access rules and ontologies for eHealth and genomic information
title_full Integration and interoperability of consent, access rules and ontologies for eHealth and genomic information
title_fullStr Integration and interoperability of consent, access rules and ontologies for eHealth and genomic information
title_full_unstemmed Integration and interoperability of consent, access rules and ontologies for eHealth and genomic information
title_sort Integration and interoperability of consent, access rules and ontologies for eHealth and genomic information
dc.creator.none.fl_str_mv Kazare, Esther Mahuza
author Kazare, Esther Mahuza
author_facet Kazare, Esther Mahuza
author_role author
dc.contributor.none.fl_str_mv Delgado Mercè, Jaime
dc.subject.none.fl_str_mv Ontologies (Information retrieval)
Genomics
Ontologies (Informàtica)
Genòmica
Àrees temàtiques de la UPC::Informàtica::Sistemes d'informació
topic Ontologies (Information retrieval)
Genomics
Ontologies (Informàtica)
Genòmica
Àrees temàtiques de la UPC::Informàtica::Sistemes d'informació
description The effective management of consent and access rules is a fundamental challenge in eHealth and genomic research, where interoperability among diverse data systems and standards is critical. This master's thesis, titled "Integration and interoperability of consent, access rules, and ontologies for eHealth and genomic information," seeks to address these challenges by examining and enhancing the integration of various health information standards and specifications such as FHIR, GA4GH, and ODRL. The report documents the initial progress made, including the development of a structured GA4GH consent format in JSON and the application of the GA4GH Machine Readable Consent Toolkit for transforming policy clauses into machine-readable formats. These advancements are part of a broader effort to assess how well current standards facilitate or hinder interoperability and to propose solutions for more seamless integration. Preliminary findings indicate significant gaps in the current frameworks, particularly in their ability to communicate and enforce consent across systems and borders. The work conducted so far highlights the potential for standardized, machine-readable consent formats to enhance data sharing and protection practices. The forthcoming phases of the thesis will delve deeper into these issues, aiming to propose robust frameworks that can be universally adopted to improve the consistency and efficiency of data handling in global health and genomic research. This research is expected to contribute valuable insights and practical solutions to the ongoing challenges of managing sensitive health information in a technologically interconnected world.
publishDate 2024
dc.date.none.fl_str_mv 2024
2024-06-27
2024
2024-11-06
dc.type.none.fl_str_mv master thesis
http://purl.org/coar/resource_type/c_bdcc
NA
http://purl.org/coar/version/c_be7fb7dd8ff6fe43
dc.type.openaire.fl_str_mv info:eu-repo/semantics/masterThesis
format masterThesis
dc.identifier.none.fl_str_mv https://hdl.handle.net/2117/417090
url https://hdl.handle.net/2117/417090
dc.language.none.fl_str_mv Inglés
eng
language_invalid_str_mv Inglés
language eng
dc.rights.none.fl_str_mv open access
http://purl.org/coar/access_right/c_abf2
dc.rights.openaire.fl_str_mv info:eu-repo/semantics/openAccess
rights_invalid_str_mv open access
http://purl.org/coar/access_right/c_abf2
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Universitat Politècnica de Catalunya
publisher.none.fl_str_mv Universitat Politècnica de Catalunya
dc.source.none.fl_str_mv reponame:UPCommons. Portal del coneixement obert de la UPC
instname:Universitat Politècnica de Catalunya (UPC)
instname_str Universitat Politècnica de Catalunya (UPC)
reponame_str UPCommons. Portal del coneixement obert de la UPC
collection UPCommons. Portal del coneixement obert de la UPC
repository.name.fl_str_mv
repository.mail.fl_str_mv
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