Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).
https://www.nivel.nl/sites/default/files/bestanden/governance-document-nzr-3.pdf

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

No

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

Yes

Description of data collection

An extraction of the GP Electronic Health Record (outpatient electronic health record) is made. We receive weekly extractions for surveillance purposes and yearly extractions that are used for other research purposes. Data are pseudonimized within the GP practice and we receive pseudonimized data, consisting of coded fields and hardly and free text fields.
Event triggering registration

Event triggering registration of a person in the data source

Insurance coverage start
Other
Practice registration

Event triggering registration of a person in the data source, other

Start of insurance coverage is related to birth, but we do not know the exact birth date

Event triggering de-registration of a person in the data source

Insurance coverage end
Other
Practice deregistration

Event triggering de-registration of a person in the data source, other

End of insurance coverage is related to death, but we do not know the exact death date for most of the cases.

Event triggering creation of a record in the data source

Prescriptions: prescription of a medicin; Contacts: claim of a contact; Journal: change in the patient record; referral: referral done via module of Zorgdomein; lab measurement: change in the lab measurement dossier
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

Yes

Linked data source 1

Pre linked

Is the data source described created by the linkage of other data sources?

No

Data source, other

Cancer registry (Nederlandse Kanker Registratie)

Linkage strategy

Probabilistic

Linkage variable

Pseudonimized combination of sex, birthdate and postal code

Linkage completeness

Almost 100%

Linked data source 2

Pre linked

Is the data source described created by the linkage of other data sources?

No

Data source, other

Claims data

Linkage strategy

Deterministic

Linkage variable

Pseudonimized citizen service number

Linkage completeness

Almost 100%

Linked data source 3

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

GP-out-of-hours service use, paramedical health care use

Linkage strategy

Deterministic

Linkage variable

Pseudonimized citizen service number

Linkage completeness

Approximately 80% for GP out-of-hours services, and less for paramedical services

Linked data source 4

Pre linked

Is the data source described created by the linkage of other data sources?

No

Data source, other

Pharmacy dispensing database (Stichting Farmaceutische Kengetallen)

Linkage strategy

Probabilistic

Linkage variable

Pseudonimized combination of sex, birthdate and postal code

Linkage completeness

Almost all can be linked (coverage SFK database 95%)

Linked data source 5

Pre linked

Is the data source described created by the linkage of other data sources?

No

Data source, other

Sociodemographic data, mortality data, family linkage data (CBS)

Linkage strategy

Deterministic

Linkage variable

Pseudonimized citizen service number

Linkage completeness

Almost 100%

Linked data source 6

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Zorgdomein (referral database)

Linkage strategy

Deterministic

Linkage variable

Pseudonimized citizen service number

Linkage completeness

Available from 2015 for approximately 100 GP practices, extended to almost 300 practices from 2021 on.
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Required for intervention studies

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

Yes

Data source preservation

Are records preserved in the data source indefinitely?

Yes

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

Yes

Data source last refresh

Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

No