FAIR PROCESSING NOTICE
The Optimum Patient Care Research Database (OPCRD) is established and maintained by Optimum Patient Care (OPC), a UK based social enterprise. Optimum Patient Care Ltd (OPC) is a not-for-profit social enterprise with over 13 years’ experience in working to support primary care services in the United Kingdom. OPC is guided by a team of leading clinical and academic experts, including Dr. Dermot Ryan, Dr. Iain Small, Dr. Rupert Jones and Prof. David Price. OPC provides clinical review and reporting services, research support services (observational, database, clinical trials), and data services in primary care across the United Kingdom. OPC also supports a number of clinical commissioning groups and health boards to improve delivery of respiratory care to their communities.
What Data OPC Holds and Why
OPC holds only de-identified and anonymised data.
To provide clinical review, research support and data services, OPC extracts de-identified electronic medical record data from GP clinical systems using APIs provided by the Clinical System Providers and through remote data extraction software developed in-house or through the use of a third party-extraction partner (Wellbeing Software).
Patients who have opted out at their GP practice to the sharing of their data are coded as such and are not extracted. In delivering OPC services, no patient identifiable data (PID) is extracted from the practice, whether using in-house software or third-party software.
In order to enable secondary care data linkage, and subject to the express consent of the GP practice, the PID required for secondary care data linkage (NHS number, date of birth and gender only) shall be extracted from the GP practice and provided to NHS Digital via a trusted and approved third party using the secure N3 Network (HSCN). OPC does not hold any PID data extracted from the GP practices. The trusted and approved third party are approved by the statutory provider of secondary care data for the relevant country, NHS Digital, and subject to Health Research Authority Confidentiality Advisory Group (HRA CAG) Section 251 approval for the use of the approved methodology to hold PID for the purpose of this data linkage. All PID held for approved data linkage will be transferred within the N3 network and held on a secure N3 server; and shall be promptly and securely destroyed following the creation of a linked dataset for the approved purpose.
How OPC Use Your Information
OPC collects information to support clinical research and to provide the clinical review and healthcare quality improvement service to your GP practice and clinical commissioning group. De-identified data is securely transferred to the OPC Service Database for analysis and the provision of these services.
Data extracted for research purposes is then anonymised and moved into the OPC Research Database (OPCRD). OPCRD has been approved by the Health Research Authority (REC reference: 15/EM/0150) to be used for ethically approved research. All research using OPCRD is registered on established study databases, such as the European Network of Centres for Pharmacoepidemiology and Pharmacovigilance.
OPC has two databases: OPC Service Database (OPCSD) and OPC Research Database (OPCRD). Data in the OPCSD is de-identified and psuedonymised to allow OPC to provide the clinical review and reporting service. Data in the OPCRD is anonymous and used for ethically approved research purposes only.
Data collected for observational research is anonymous. No personal data is collected.
Data collected for clinical research/trials is anonymous. No personal data is collected.
Service Data: As per the OPC service agreement, data held as part of the clinical review service is held with a perpetual licence. If a GP practice no longer wishes for OPC to retain their data, OPC will delete this data upon request in accordance with the General Data Protection Regulation and Data Protection Act 2018.
Research Data: Research data is held according to each research project’s data retention policy or requirement.
Optimum Patient Care Ltd. is a registered Data Controller with the ICO.
Registration number: ZA197058
Data Protection Officer: Francis Appiagyei
Caldicott Guardian: Francis Appiagyei
OPC staff are subject to the Common Law Duty of Confidentiality and are trained and fully understand the confidential and sensitive nature of the data extracted.
Service Data: A contractual service agreement is put in place between the GP practice and OPC to process de-identified data for the purpose of providing the practice with clinical review and research support services.
Research Data: All research data is anonymous. All research requiring the use of anonymous data from OPCRD must have prior research ethics approval. Research ethics approval is governed and provided by the Anonymised Data Ethics and Protocol Transparency committee (ADEPT). ADEPT is an independent body of experts and regulators, commissioned by the Respiratory Effectiveness Group to govern the standards of research conducted on internationally recognised databases and registries.
Clinical trials data: Individual signed informed consent is received from each trial participant to collect or process their data for participating in clinical trials supported by OPC.
Your Data Protection Rights
Under the Data Protection Act 2018, you have the right:
- To request information about how your personal data is processed
- To request a copy of that personal data
- To request the correction of any inaccurate personal data
- To object about how your personal data is processed
- To request that your personal data is deleted if there is no longer a justification to keep it
- To ask for the restriction of the processing of your personal data in certain circumstances
- To lodge a complaint with the Information Commissioner, an independent regulator
As OPC does not hold any personal identifiable data OPC is not required, nor is it able, to support in the exercise of these rights since OPC has no indication of an individual’s identity.
Any identifiable data of participants in clinical trials is collected or processed with the individual’s signed informed consent. If you have questions about the use of your data for a clinical trial, please contact your GP practice or the relevant study team.
You have the right to opt out of the sharing of your confidential patient health information with OPC. If you do not wish for your data to be collected or processed, please contact and inform your GP practice.
Complaints and Questions
If you have any queries relating to this Fair Processing Notice or use of your data, or you have a complaint, please contact OPC’s data protection officer:
OPC Data Protection Officer
Optimum Patient Care Ltd
5 Coles Lane, Oakington, Cambridge, CB24 3BA
Tel: 01223 967873
If you wish to make a complaint to the Information Commissioner or request independent advice, the ICO can be contacted at:
Information Commissioner’s Office
Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF
Tel: 0303 123 1113