Glossary

Based on definitions from TEHDAS (2025). See also the highly relevant UK TRE Glossary.

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Anonymisation
Altering personal data so individuals cannot be identified, directly or indirectly.

Benefit (of data use)
Positive outcomes from data use (e.g., social, health, environmental).

Data access
User processes data provided by a holder under set conditions without necessarily receiving a copy.

Data controller
Entity deciding purposes and essential means of personal-data processing; accountable for compliance.

Data linkage
Combining datasets about the same topic/person using identifiers or probabilistic methods.

Data minimisation
Collect/process only what’s necessary for the stated purpose; applies across the lifecycle.

Data permit
HDAB decision authorising a user to process specified health data for defined secondary-use purposes.

Data quality
Fitness of health data elements for intended primary and secondary uses.

Dataset
Structured collection of electronic health data.

Dataset catalogue
Public, structured inventory of dataset descriptions accessible via an online portal.

Dataset record
Single structured unit in a dataset (e.g., a row) describing one entity/instance.

Dataset subset
Selected records/variables from a dataset preserving key characteristics.

Dataset description
Metadata description of datasets published via the catalogue.

Electronic health data
Personal or non-personal electronic health data.

EU dataset catalogue
EU-level catalogue of dataset descriptions; EU/national/participant catalogues are public.

Health data access application
Application to access personal-level data in anonymised or pseudonymised form for secondary use.

Health Data Access Body (HDAB)
Member-state authority for secondary use: evaluates requests, issues permits, sources data, provides access in SPEs, and publishes permit info.

Health data applicant
Person/organisation submitting a data request or access application to an HDAB for EHDS Art. 53 purposes.

Health data holder
Entity with the right to process/provide health data (e.g., providers, registries, payers, research bodies, EU bodies).

Health data request
Request for anonymised statistical data for permitted secondary-use purposes.

Health data user
Person/organisation (incl. EU bodies) lawfully accessing data for secondary use via permit/approval.

Intermediation entity
Legal person (where established) acting for certain holders to process, provide, and exchange data for secondary use.

Interoperability
Ability of organisations/systems/devices to exchange and use info without changing content.

Legal basis of data processing
Conditions that make processing lawful; EHDS lists secondary-use purposes.

Metadata
Structured data describing content/use to aid discovery and reuse.

National dataset catalogue
Public national catalogue describing sources, nature, and availability conditions of electronic health data.

Non-personal electronic health data
Health data that are anonymised or never related to an identifiable person.

Personal electronic health data
Health/genetic data relating to an identifiable person, processed electronically.

Pseudonymisation
Processing so data can’t be attributed to a person without separately kept additional info and safeguards.

Public value
Weighted view of risks/benefits: sustainability, fairness, harm assessment/mitigation, and safeguards.

Re-identification risk
Likelihood that de-identified data can be linked back to a person.

Secondary use
Processing health data for EHDS Chapter IV purposes other than the original purpose.

Secure Processing Environment (SPE)
Controlled environment meeting security/interoperability requirements, granting access only to authorised users and logging activity.

Trusted health data holder
Designated holder eligible for simplified permit procedures and able to supply data via an SPE they manage.

Trusted third party (TTP)
Independent pseudonymisation entity computing pseudonyms from identifiers; holds no other data.