OPC collects a diverse range of data recorded in UK healthcare systems, primarily the clinical systems used by primary care providers. Recorded from patients’ birth, these data include details on symptoms, tests and results, diagnoses, referrals, prescribed therapy and outcomes as well as many other aspects of care. Following initial extraction, the data are collected incrementally every month, allowing development of a longitudinal database in which patients can be tracked over time. OPC data does not stop there, with opportunities to send clinically relevant questionnaires and conduct clinical reviews that uniquely link EMR further enhancing OPCRD data.
OPC uses approved data extraction tools, which remotely identify, extract and securely transmit electronic medical record data from within all primary care clinical information systems to the OPCRD secured data servers.
OPC can develop clinically relevant questionnaires for all disease areas for distribution via its clinical review services. All questionnaires are sent via the OPC software’s NHS approved mailing house ‘‘Docmail” or SMS from the GP practice. Patients can respond online or via the free-post envelope provided. Following data entry the questionnaire data is stored in OPCRD with linked identifiers to patients EMR data.
Yes, we extract data from all clinical systems in the UK. These include:
- TPP SystmOne
- InPS Vision
- Microtest Evolution
Any research project conducted on OPCRD data needs to be reviewed and ethically approved by the Anonymous Data Ethics Protocols and Transparency (ADEPT) committee, an independent body of experts and regulators commissioned by the Respiratory Effectiveness Group (REG).
ADEPT committee reviews applicant study protocols for scientific quality. If requested, OPC can support applicants with the development and submission of their applications.
Patient level data is de-identified ‘at source’. The patients’ personal identifiers such as name, date of birth and address are not extracted by the data extraction tools and always remain at the GP practice. Although pseudoanonymous data is held in OPC’s service database, any data transferred and held in OPCRD is fully anonymous.
OPC respects patients’ requests to opt-out of data sharing. Options available in the GP EMR system allow for patient to be flagged as opting out of the data sharing and thus OPCRD data extraction. If this option is selected, the patient’s data will not be extracted by OPCRD for research or for data linkage. OPCRD also reviews and respects sensitive clinical codes, ensuring that these codes are not extracted into OPCRD.
The ADEPT approval process is fast and normally requires 3 weeks, but is often completed within 2 weeks.
All applicants requiring access and/or use of anonymised data from the OPCRD need to apply to the ADEPT Committee (https://www.regresearchnetwork.org/adept-committee/).
The completed application form needs to be accompanied by the following:
- Protocol (if applicable)
- Ethics/Regulatory approvals (if applicable)
- Data specification/requirements
- ADEPT Application fees (application processing fees)
To submit your ADEPT application, please click here.
OPCRD Data Application
Following ADEPT approval an OPCRD data request should take place. You will be required to upload:
- Study Protocol,
- Data Specification (Cohort Criteria & Read Codes)
- Regulatory Approvals (ADEPT. REC etc)
OPCRD can access data from a wide range of sources including:
- National Prescribing Data
- Electronic Medical Records
- Questionnaire Data Collection
- Clinical Review Data Collection
- Secondary Care
- Bespoke Data Linkage Registries
- Clinical Trials/Intervention Programs: Outcome data
The data collected and stored in OPCRD are held within a relational SQL database stored on OPC’s secure data servers held in the United Kingdom.
OPC have ensured involvement of an independent oversight committee, inclusive of clinicians and patients, in the development of its services and the OPCRD databases. The committee includes:
- Clinical expert advisors
- Service users
- Lay people and patients
- Nurse advisors
- Secondary care advisors
OPC continues to work with a number of national and local service users and patient groups in the establishment of OPCRD. OPC collaborates with the British Lung Foundation (BLF) and Asthma UK to ensure patient involvement.
Yes, with access to over 12 million patients EMR data OPC can report clinical outcomes from real world data to accurately inform your power calculation within 2 weeks and facilitate a successful clinical trial.