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.fundacionriojasalud.org/innovacion/unidad-ciencia-dato/pascal

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

Global initial load plus daily, standardized and pseudo-anonymized load from EHR (primary and hospital patient attention) to a global data set used for secondary purposes (research, development and innovation) using open source tools (Phyton and Apache)
Event triggering registration

Event triggering registration of a person in the data source

Birth
Insurance coverage start
Start of treatment

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

Death
Insurance coverage end

Event triggering creation of a record in the data source

All contact of the patient with public care system of La Rioja (hospital procedures, medical attention, medical product dispensing...)
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

Healthcare databases and electronic medical record are linked in a deterministic way

Linked data source 1

Pre linked

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

No

Data source, other

Enviroment and other open data source databases

Linkage strategy

Deterministic

Linkage variable

Date, address, others…

Linkage completeness

Daily monitoring to identify and correct unreferenced records

Linked data source 2

Pre linked

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

Yes

Data source, other

HIS

Linkage strategy

Deterministic

Linkage variable

Pseudo anonymous code in compliance with the Spanish Regulation (Organic Law 3/2018, of December 5, Protection of Personal Data and guarantee of digital rights)
https://www.boe.es/boe/dias/2018/12/06/pdfs/BOE-A-2018-16673.pdf

Linkage completeness

Daily monitoring to identify and correct unreferenced records

Linked data source 3

Pre linked

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

Yes

Data source, other

LIS

Linkage strategy

Deterministic

Linkage variable

Pseudo anonymous code in compliance with the Spanish Regulation (Organic Law 3/2018, of December 5, Protection of Personal Data and guarantee of digital rights)
https://www.boe.es/boe/dias/2018/12/06/pdfs/BOE-A-2018-16673.pdf

Linkage completeness

Daily monitoring to identify and correct unreferenced records

Linked data source 4

Pre linked

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

Yes

Data source, other

Pharmacy, Primary Health Care and specialized databases for professionals healthcare support

Linkage strategy

Deterministic

Linkage variable

Pseudo anonymous code in compliance with the Spanish Regulation (Organic Law 3/2018, of December 5, Protection of Personal Data and guarantee of digital rights)
https://www.boe.es/boe/dias/2018/12/06/pdfs/BOE-A-2018-16673.pdf

Linkage completeness

Daily monitoring to identify and correct unreferenced records
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Required for all 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?

Yes

CDM Mappings

Data source ETL CDM version

5.4

Data source ETL frequency

1,00 month

Data source ETL status

In progress