This extension provides concepts to support implementations of the upcoming EU Health Data Space (EHDS) regulation by providing concepts and methods for implementing the regulation, as well as to support its alignment with other regulations such as GDPR, DGA, and AI Act.
NOTE: This is a draft vocabulary, which will be updated as EHDS is published and formally recognised as a regulation. The DPVCG welcomes participation and contributions for this work.
Contributing: The DPVCG welcomes participation to improve the DPV and associated resources, including expansion or refinement of concepts, requesting information and applications, and addressing open issues. See contributing guide for further information.
DPV and Related Resources
[[[DPV]]]: is the base/core specification for the 'Data Privacy Vocabulary', which is extended for Personal Data [[PD]], Locations [[LOC]], Risk Management [[RISK]], Technology [[TECH]], and [[AI]]. Specific [[LEGAL]] extensions are also provided which model jurisdiction specific regulations and concepts . To support understanding and applications of [[DPV]], various guides and resources [[GUIDES]] are provided, including a [[PRIMER]]. A Search Index of all concepts from DPV and extensions is available.
[[DPV]] and related resources are published on GitHub. For a general overview of the Data Protection Vocabularies and Controls Community Group [[DPVCG]], its history, deliverables, and activities - refer to DPVCG Website. For meetings, see the DPVCG calendar.
The peer-reviewed article “Creating A Vocabulary for Data Privacy” presents a historical overview of the DPVCG, and describes the methodology and structure of the DPV along with describing its creation. An open-access version can be accessed here, here, and here. The article Data Privacy Vocabulary (DPV) - Version 2, accepted for presentation at the 23rd International Semantic Web Conference (ISWC 2024), describes the changes made in DPV v2.
Introduction
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Data
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eu-ehds:BehavioralData: Information about behavioral data impacting on health
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eu-ehds:BiobankData: Information about electronic health data from biobanks
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eu-ehds:ElectronicHealthRecord: Information about electronic health record
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eu-ehds:EnvironmentalData: Information about environmental data impacting on health
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eu-ehds:HealthAdminData: Information about health-related administrative data
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eu-ehds:ClaimData: Information about health-related claims data
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eu-ehds:ReimbursementData: Information about health-related reimbursement data
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eu-ehds:HealthProfessionalData: Information about the identity of the health professionals involved in the treatment of the person
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eu-ehds:HealthRegistryData: Information about registries of health data
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eu-ehds:MedicalDevicesRegistryData: Information about electronic health data from registries for medical devices
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eu-ehds:MedicalRegistryData: Information about electronic health data from medical registries
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eu-ehds:DiseaseRegistryData: Information about electronic health data from medical registries for specific diseases
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eu-ehds:MedicinalProductsRegistryData: Information about electronic health data from registries for medicinal products
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eu-ehds:PublicHealthRegistryData: Information about registries of public health data
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eu-ehds:InferredHealthData: Information about inferred health data, including improvements such as correction, annotation, or enrichment based on authorised processing operations
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eu-ehds:EHRManufacturer: Actor that manufactures electronic health records
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eu-ehds:EHRSupplier: Actor that supplies electronic health records
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eu-ehds:HealthcareProvider: An entity that provides healthcare-related services
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eu-ehds:HealthDataAccessBody: An entity governed by public law responsible for granting access to electronic health data for secondary use
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eu-ehds:HealthProfessional: An entity that works as a health professional
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eu-ehds:TechnologyDistributor: Actor that distributes Technology
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eu-ehds:WellnessAppSupplier: Actor that supplies wellness apps
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eu-ehds:WellnessAppManufacturer: Actor that manufactures wellness apps
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Purposes
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eu-ehds:DevelopPublicHealthProductsAndServices: Purposes associated with developing products and services that contribute to public health
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eu-ehds:DevelopSocialSecurityProductsAndServices: Purposes associated with developing products and services that contribute to social security
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eu-ehds:HealthcareScientificResearch: Purposes associated with healthcare scientific research
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eu-ehds:ImproveHealthcareEducation: Purposes associated with improving the provision of healthcare education
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eu-ehds:PersonalisedHealthcare: Purposes associated with providing personalised healthcare
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eu-ehds:ProvideHealthcareOfficialStatistics: Purposes associated with facilitating the development, production and dissemination of reliable official statistics related to health or care sectors
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eu-ehds:PublicInterestRelatedToHealth: Purposes associated with pursuing activities for reasons of public interest in the area of public and occupational health
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eu-ehds:EnsureQualitySafetyHealthcare: Purposes associated with ensuring high levels of quality and safety of healthcare
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eu-ehds:EnsureQualitySafetyMedicalDevices: Purposes associated with ensuring high levels of quality and safety of medical devices
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eu-ehds:EnsureQualitySafetyMedicinalProducts: Purposes associated with ensuring high levels of quality and safety of medicinal products
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eu-ehds:ProtectAgainstCrossBorderThreatsToHealth: Purposes associated with the protection against serious cross-border threats to health
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eu-ehds:PublicHealthSurveillance: Purposes associated with public health surveillance
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eu-ehds:SupportAuthoritiesRegulatoryActivities: Purposes associated with supporting authorities to carry out their regulatory tasks
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eu-ehds:TrainTestAndEvaluateHealthAlgorithms: Purposes associated with training, testing and evaluating health-related algorithms
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eu-ehds:TrainTestAndEvaluateAISystemsAlgorithms: Purposes associated with training, testing and evaluating algorithms in AI systems
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eu-ehds:TrainTestAndEvaluateHealthAppsAlgorithms: Purposes associated with training, testing and evaluating algorithms in digital health applications
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eu-ehds:TrainTestAndEvaluateMedicalDevicesAlgorithms: Purposes associated with training, testing and evaluating algorithms in medical devices
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Processes
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eu-ehds:DataPermit: Permit issued by health data access bodies to data users regarding data access applications
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eu-ehds:DataRequest: Request sent by data users to health data access bodies, seeking access to statistically anonymised electronic health data
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Contributors
The following people have contributed to this vocabulary. The names are ordered alphabetically. The affiliations are informative do not represent formal endorsements. Affiliations may be outdated. The list is generated automatically from the contributors listed for defined concepts.
Beatriz Esteves (IDLab, IMEC, Ghent University)
Funding Acknowledgements
Funding Sponsors
The DPVCG was established as part of the SPECIAL H2020 Project, which received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 731601 from 2017 to 2019.
Harshvardhan J. Pandit was funded to work on DPV from 2020 to 2022 by the Irish Research Council's Government of Ireland Postdoctoral Fellowship Grant#GOIPD/2020/790.
The ADAPT SFI Centre for Digital Media Technology is funded by Science Foundation Ireland through the SFI Research Centres Programme and is co-funded under the European Regional Development Fund (ERDF) through Grant#13/RC/2106 (2018 to 2020) and Grant#13/RC/2106_P2 (2021 onwards).
Funding Acknowledgements for Contributors
The contributions of Beatriz Esteves have received funding through the PROTECT ITN Project from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 813497.
The contributions of Harshvardhan J. Pandit have been made with the financial support of Science Foundation Ireland under Grant Agreement No. 13/RC/2106_P2 at the ADAPT SFI Research Centre.