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).
SIDIAP

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

The Information System for Research in Primary Care (SIDIAP; www.sidiap.org) database includes routinely collected data by >30 000 professionals from the Catalan Health Institute (ICS).
During the 1990s, the ICS created a computerized programme [estació clínica d’atenció primària (e-CAP)] for the recording of information during primary care visits in a structured format that has been in use since 2005.
In 2010, the ICS and the Institute for Primary Health Care Research Jordi Gol i Gurina (IDIAPJGol) created SIDIAP, which included the data collected through the e-CAP programme since 2006.
SIDIAP was designed to provide a valid and reliable database of selected information from the patients’ electronic health records (EHRs) for research.
Event triggering registration

Event triggering registration of a person in the data source

Birth
Immigration
Practice registration

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

Death
Emigration
Practice deregistration

Event triggering creation of a record in the data source

Any data registered by a healthcare professional in primary care can be available.
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

Data downloaded each update and linked individually.

Linkage description, possible linkage

Linkage is performed on a project by project basis and by a third trusted party.

Linked data source 1

Pre linked

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

No

Data source, other

CMBD-URG (Hospital Emergency Room)

Linkage strategy

Deterministic

Linkage variable

Unique indentifier

Linkage completeness

Linkage is performed for all hospitals in Catalonia

Linked data source 2

Pre linked

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

No

Data source, other

Conjunt Mínim Bàsic de Dades Altes Hospitalaries (CMBD AH, Hospital Discharges)

Linkage strategy

Deterministic

Linkage variable

Unique indentifier

Linkage completeness

Linkage is performed for all hospitals in Catalonia

Linked data source 3

Pre linked

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

No

Data source, other

MHDA (Drugs Hospitalaries Dispensated in Ambulatory)

Linkage strategy

Deterministic

Linkage variable

Unique indentifier

Linkage completeness

Linkage is performed for all hospitals in Catalonia

Linked data source 4

Pre linked

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

Yes

Data source, other

Pharmacies dispensations, EHR and Laboratories datasets

Linkage strategy

Deterministic

Linkage variable

Personal identifier code

Linkage completeness

90.00%
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?

No

Data source preservation length

5 years

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 specifications (link)

Data source ETL CDM version

2.8

Data source ETL frequency

12,00 months

Data source ETL status

Completed

Data source ETL specifications (link)

Data source ETL CDM version

5.3

Data source ETL frequency

12,00 months

Data source ETL status

Completed

Data source ETL specifications (link)