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

https://www.iacs.es/servicios/biobanco/biobanco-solicitar-muestras-y-servicios/

Access to subject details

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

No

Description of data collection

A collection of orchestred ETL processes are executed daily against Clinical Information Systems in Aragon Public Health Service. Data is pseudonymised in origin, and staged in BIGAN's staging repository. Afterwards, a series of recoding, data curation, data linkage and quality improvement processes are executed to final storage in a Common Data Model
Event triggering registration

Event triggering registration of a person in the data source

Birth
Immigration
Residency obtained

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

Death
Emigration
Loss to follow up
Other

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

Records are not deleted from repository. When a patient dies or emigrates, its personal record is marked as not-active, but is preserved for retrospective analysis

Event triggering creation of a record in the data source

Records are created in Clinical Information Systems during daily clinical practice and health administrative processes. There is no process to create records directly in BIGAN repository.
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

All the information systems share a unique person code for each citizen. BIGAN data source generates a pseudonym code by encrypting the citizen's ID.

Linked data source 1

Pre linked

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

Yes

Data source, other

Chronic Kidney Disease register

Linkage variable

Citizen's ID

Linkage completeness

Almost complete, except some private hopital patients not correctly identified

Linked data source 2

Pre linked

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

Yes

Data source, other

Colon Cancer Register

Linkage variable

Citizen's ID

Linkage completeness

Almost complete, except some private hopital patients not correctly identified

Linked data source 3

Pre linked

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

Yes

Data source, other

e-Prescription

Linkage variable

Citizen's ID

Linkage completeness

Almost complete, except some private hopital patients not correctly identified

Linked data source 4

Pre linked

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

Yes

Data source, other

Laboratory IS (from 10 public hospitals)

Linkage variable

Citizen's ID

Linkage completeness

Almost complete, except some private hopital patients not correctly identified

Linked data source 5

Pre linked

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

Yes

Data source, other

Newborn screening register

Linkage variable

Citizen's ID

Linkage completeness

Almost complete, except some private hopital patients not correctly identified

Linked data source 6

Pre linked

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

Yes

Data source, other

Regional Electronic Health Record

Linkage variable

Citizen's ID

Linkage completeness

Almost complete, except some private hopital patients not correctly identified

Linked data source 7

Pre linked

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

Yes

Data source, other

Regional Radiology Ring

Linkage variable

Citizen's ID

Linkage completeness

Almost complete, except some private hopital patients not correctly identified

Linked data source 8

Pre linked

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

Yes

Data source, other

Users Database (health system cover-up)

Linkage variable

Citizen's ID

Linkage completeness

Almost complete, except some private hopital patients not correctly identified
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Other

Informed consent, other

Required for studies with small number of patients or if aditional information from EHR is needed

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

5.3

Data source ETL frequency

1,00 month

Data source ETL status

Completed