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).

Biospecimen access

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

Yes

Biospecimen access conditions

Our research institute has a Biobank. With proper Ethics approval this speciments could be accessed

Access to subject details

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

Yes

Description of data collection

EHR in public primary care and hospitals
Event triggering registration

Event triggering registration of a person in the data source

Birth
Insurance coverage start
Practice registration
Residency obtained

Event triggering creation of a record in the data source

Being in the census or any contact with the public health system
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

Linkage description, pre-linked

Accross the diferent systems and tables there are a few unique identifiers for every record.

Linkage description, possible linkage

We can link every user with the coordinates of their home or place of care. By having the National ID number or passport of every user we can match any other public source

Linked data source 1

Pre linked

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

No

Data source, other

Census

Linkage strategy

Deterministic

Linkage variable

DNI

Linkage completeness

The access to personal data from the national statistics institute is restricted, so may be needed to aggregate users in order to match with those sources.

Linked data source 2

Pre linked

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

Yes

Data source, other

CMBD – Codification of Hospital Care episodes

Linkage strategy

Deterministic

Linkage variable

Health Record Number (NHC), Health Card registration number(CIP), National ID (DNI), Unique Personal Identification numbre (UIP)

Linked data source 3

Pre linked

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

No

Data source, other

Continous Home Survey

Linkage strategy

Deterministic

Linkage variable

DNI

Linkage completeness

The access to personal data from the national statistics institute is restricted, so may be needed to aggregate users in order to match with those sources.

Linked data source 4

Pre linked

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

Yes

Data source, other

Electronic prescription system

Linkage strategy

Deterministic

Linkage variable

Health Record Number (NHC), Health Card registration number(CIP), National ID (DNI), Unique Personal Identification numbre (UIP)

Linked data source 5

Pre linked

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

Yes

Data source, other

ESIAP – Primary Care Information System

Linkage strategy

Deterministic

Linkage variable

Health Record Number (NHC), Health Card registration number(CIP), National ID (DNI), Unique Personal Identification numbre (UIP)

Linkage completeness

By design, all records should be completly linked accross the systems

Linked data source 6

Pre linked

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

No

Data source, other

GIS

Linkage strategy

Deterministic

Linkage variable

DNI

Linkage completeness

The access to personal data from the national statistics institute is restricted, so may be needed to aggregate users in order to match with those sources.
Data management specifications that apply for the data source

Data source refresh

Quarterly

Informed consent for use of data for research

Waiver

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?

Yes

CDM Mappings

Data source ETL CDM version

5.4

Data source ETL frequency

3,00 months

Data source ETL status

Completed

Data source ETL specifications (link)