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.opcrd.optimumpatientcare.org/data-transparency

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 process of collecting data - Secure software tools are installed at participating practices to extract and de-identify patient data from electronic health records. Patient reported data is also collected through paper and electronic patient questionnaires administered at participating practices.
Event triggering registration

Event triggering registration of a person in the data source

Practice registration

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

Death
Practice deregistration

Event triggering creation of a record in the data source

patient healthcare activity: appointment, clinical procedure, prescribing, etc.
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, possible linkage

Primary care data from OPCRD can be linked to other health care datasets under appropriate approvals and practice consent. Deterministic linkage can be performed using direct identifiers and also using non-identifiable information.

Linked data source 1

Pre linked

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

No

Data source, other

Hospital Episode Statistics (HES) - England (provided by NHS Digital)

Linkage strategy

Deterministic

Linkage variable

NHS number, date of birth, sex

Linkage completeness

Proof of concept completed 2022; REC and CAG approvals completed; awaiting NHS Digital approval for regular linkage.

Linked data source 2

Pre linked

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

No

Data source, other

Patient Episode Database for Wales (PEDW) - Wales (provided by Digital Health and Care Wales)

Linkage strategy

Deterministic

Linkage variable

Pseudonymised NHS number, hashing algorithm applied

Linkage completeness

Proof of concept completed 2022; pending DHCW approvals for regular linkage

Linked data source 3

Pre linked

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

No

Data source, other

Scottish Morbidity Records (SMR) - Scotland (provided by Public Health Scotland)

Linkage strategy

Deterministic

Linkage variable

Pseudonymised CHI number, hashing algorithm applied

Linkage completeness

Proof of concept completed 2022; pending PHS approvals for regular linkage

Linked data source 4

Pre linked

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

No

Data source, other

UK severe and difficult to treat asthma registry https://thorax.bmj.com/content/76/3/220

Linkage strategy

Probabilistic

Linkage variable

Age/year of birth, sex, other variables in EMR

Linkage completeness

Proof of concept completed; regular probabilistic linkage can be undertaken for UKSAR approved projects.
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Not Required

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