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)?

No

Access to subject details

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

No

Description of data collection

Please see Section 3.1 'Data Collection' in http://bifap.aemps.es/docs/BIFAP_Data_Access_Governance_v2_2021_20211011_with%20annexes.pdf
Event triggering registration

Event triggering registration of a person in the data source

Other

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

Upon registration with a primary care physician within the Spanish NHS (=98,9% of the Spanish population) in the 9 out of the 17 Spanish regions that contribute data

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

Death
Emigration

Event triggering creation of a record in the data source

In every encounter with the general practitioner/paediatrician. Hospital admission and pharmacy dispensation will also trigger the creation of a record
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 sources

Pre linked

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

No

Data source, other

BIFAP Diagnosis Tests of Covid-19

Linkage strategy

Deterministic

Linkage variable

The Personal Identification Code for the Autonomous Community (CIPA) is the variable used in the Autonomous Communities for the combination or linking of the different records for the same patient (primary care records, pharmacy dispensing records, hospital discharge diagnoses and Other Data banks). Subsequently a pseudonymisation procedure is carried out: the CIPA is eliminated by the computer technicians of the autonomous community, maintaining a pseudonymised identifier that distinguishes each patient from the Others in BIFAP. At the AEMPS, the Patient ID is finally generated from the first identifier.

Linkage completeness

Only patients included the Primary care medical records (PC-MR) and identified with a CIPA (the single linkage variable) are linked to the Other Data sources in BIFAP. Therefore, completeness is 100%. On the Other hand, any patients identified with a CIPA in Data sources (Data banks) but not having a PC-MR are not included in BIFAP.

Pre linked

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

No

Data source, other

BIFAP EMRs from Primary Care

Linkage strategy

Deterministic

Linkage variable

The Personal Identification Code for the Autonomous Community (CIPA) is the variable used in the Autonomous Communities for the combination or linking of the different records for the same patient (primary care records, pharmacy dispensing records, hospital discharge diagnoses and Other Data banks). Subsequently a pseudonymisation procedure is carried out: the CIPA is eliminated by the computer technicians of the autonomous community, maintaining a pseudonymised identifier that distinguishes each patient from the Others in BIFAP. At the AEMPS, the Patient ID is finally generated from the first identifier.

Linkage completeness

Only patients included the Primary care medical records (PC-MR) and identified with a CIPA (the single linkage variable) are linked to the Other Data sources in BIFAP. Therefore, completeness is 100%. On the Other hand, any patients identified with a CIPA in Data sources (Data banks) but not having a PC-MR are not included in BIFAP.

Pre linked

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

No

Data source, other

BIFAP Hospital Diagnosis at in patients discharge

Linkage strategy

Deterministic

Linkage variable

The Personal Identification Code for the Autonomous Community (CIPA) is the variable used in the Autonomous Communities for the combination or linking of the different records for the same patient (primary care records, pharmacy dispensing records, hospital discharge diagnoses and Other Data banks). Subsequently a pseudonymisation procedure is carried out: the CIPA is eliminated by the computer technicians of the autonomous community, maintaining a pseudonymised identifier that distinguishes each patient from the Others in BIFAP. At the AEMPS, the Patient ID is finally generated from the first identifier.

Linkage completeness

Only patients included the Primary care medical records (PC-MR) and identified with a CIPA (the single linkage variable) are linked to the Other Data sources in BIFAP. Therefore, completeness is 100%. On the Other hand, any patients identified with a CIPA in Data sources (Data banks) but not having a PC-MR are not included in BIFAP.

Pre linked

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

No

Data source, other

BIFAP Medicines Dispensed at Community Pharmacies

Linkage strategy

Deterministic

Linkage variable

The Personal Identification Code for the Autonomous Community (CIPA) is the variable used in the Autonomous Communities for the combination or linking of the different records for the same patient (primary care records, pharmacy dispensing records, hospital discharge diagnoses and Other Data banks). Subsequently a pseudonymisation procedure is carried out: the CIPA is eliminated by the computer technicians of the autonomous community, maintaining a pseudonymised identifier that distinguishes each patient from the Others in BIFAP. At the AEMPS, the Patient ID is finally generated from the first identifier.

Linkage completeness

Only patients included the Primary care medical records (PC-MR) and identified with a CIPA (the single linkage variable) are linked to the Other Data sources in BIFAP. Therefore, completeness is 100%. On the Other hand, any patients identified with a CIPA in Data sources (Data banks) but not having a PC-MR are not included in BIFAP.

Pre linked

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

No

Data source, other

BIFAP Vaccines Covid-19 administered National Registry

Linkage strategy

Deterministic

Linkage variable

The Personal Identification Code for the Autonomous Community (CIPA) is the variable used in the Autonomous Communities for the combination or linking of the different records for the same patient (primary care records, pharmacy dispensing records, hospital discharge diagnoses and Other Data banks). Subsequently a pseudonymisation procedure is carried out: the CIPA is eliminated by the computer technicians of the autonomous community, maintaining a pseudonymised identifier that distinguishes each patient from the Others in BIFAP. At the AEMPS, the Patient ID is finally generated from the first identifier.

Linkage completeness

Only patients included the Primary care medical records (PC-MR) and identified with a CIPA (the single linkage variable) are linked to the Other Data sources in BIFAP. Therefore, completeness is 100%. On the Other hand, any patients identified with a CIPA in Data sources (Data banks) but not having a PC-MR are not included in BIFAP.

Pre linked

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

No

Data source, other

Causes of Death national registry

Linkage strategy

Deterministic

Linkage variable

The Personal Identification Code for the Autonomous Community (CIPA) is the variable used in the Autonomous Communities for the combination or linking of the different records for the same patient (primary care records, pharmacy dispensing records, hospital discharge diagnoses and Other Data banks). Subsequently a pseudonymisation procedure is carried out: the CIPA is eliminated by the computer technicians of the autonomous community, maintaining a pseudonymised identifier that distinguishes each patient from the Others in BIFAP. At the AEMPS, the Patient ID is finally generated from the first identifier.
In the Causes of Death national registry persons personal identifiers are different from the CIPA. Therefore, an additional linkage process of the CIPA and the personal identifiers in the Causes of Death national registry (national identitiy number and Others) is performed by the autonomous regions.

Linkage completeness

Only patients included the Primary care medical records (PC-MR) and identified with a CIPA (the single linkage variable) are linked to the Other Data sources in BIFAP. Therefore, completeness is 100%. On the Other hand, any patients with a record in the Cause of Death national registry but not having a PC-MR are not included in BIFAP.

Pre linked

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

No

Data source, other

Hospital Pharmacies dispensing Data

Linkage strategy

Deterministic

Linkage variable

The Personal Identification Code for the Autonomous Community (CIPA) is the variable used in the Autonomous Communities for the combination or linking of the different records for the same patient (primary care records, pharmacy dispensing records, hospital discharge diagnoses and Other Data banks). Subsequently a pseudonymisation procedure is carried out: the CIPA is eliminated by the computer technicians of the autonomous community, maintaining a pseudonymised identifier that distinguishes each patient from the Others in BIFAP. At the AEMPS, the Patient ID is finally generated from the first identifier.

Linkage completeness

Only patients included the Primary care medical records (PC-MR) and identified with a CIPA (the single linkage variable) are linked to the Other Data sources in BIFAP. Therefore, completeness is 100%. On the Other hand, any patients identified with a CIPA in Data sources (Data banks) but not having a PC-MR are not included in BIFAP.
Data management specifications that apply for the data source

Data source refresh

Every 6 months

Informed consent for use of data for research

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?

No

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

1.0

Data source ETL frequency

2,00 months

Data source ETL status

Completed

Data source ETL specifications (link)

Data source ETL CDM version

For ConcepTION each study implies one or more ETL and different versions of the CDM can be used in different moments.

Data source ETL frequency

6,00 months

Data source ETL status

Completed

Data source ETL CDM version

5.4

Data source ETL frequency

6,00 months

Data source ETL status

In progress