Data Protection and Transparency

The information provided on this page covers how OPC collects, processes, stores and uses data relating to its quality improvement programme and research support activities.

Information on how we handle personal data including information gathered on our website, is provided in our Privacy Notice.

Data protection assurance

OPC quality improvement programme and research support is provided under strict data security and protection policies to assure patients, practices, researchers and collaborators that we collect and use data securely and lawfully in compliance with the General Data Protection Regulation (EU) 2016/679 (GDPR) and the Data Protection Act 2018 (DPA).

OPC is a registered data controller with the Information Commissioner’s Office, registration number: ZA197058.

OPC undertakes and complies with the NHS Data Security and Protection Toolkit (ref: 8HR5) assessment annually. The assessment ensures we comply with the  National Data Guardian’s (NDG) Data Security Standards.

OPC does not collect data for patients who have expressed that their data should not be shared, including those who have expressed so through the National Data Opt-out Policy in England.

OPC employees and contractors are regularly trained on data protection, including compulsory annual certified NHS Data Security and Protection training and two-yearly NIHR certified Good Clinical Practice (GCP) training. We conduct regular checks and audits to ensure compliance with the GDPR/DPA and our data security policies.

Data OPC holds and why

Quality improvement data

OPC collects pseudonymised de-identified data from GP practices who are receiving the OPC quality improvement programme and research support service.

The de-identified data collected is used to provide GP practices with quality improvement reports and to help GP practices track the improvements they are making to patient care. The de-identified data is also used to help GP practices take part in clinical research.

The data is collected from the GP practice electronic health records using secure extraction software. The data we receive from GP practices is always de-identified, which means that any information that will identify a patient (e.g. name, date of birth, address, contact information) has been removed at the GP practice.

The data collected is also pseudonymised, which means a unique code (pseudonym) is assigned to each patient’s de-identified data before the data leaves the GP practice. Pseudonymised data enables only the GP practice to re-identify patients (only at the GP practice) in their quality improvement reports and research support reports.

No patient identifiable or sensitive information is collected or leaves GP practices, unless agreed otherwise for the purpose of secondary care data linkage.

OPC does not collect data for patients who have expressed that their data should not be shared, including those who have expressed so through the National Data Opt-out Policy scheme in England.

All pseudonymised de-identified data provided by GP practices as part of our quality improvement programme and research support activities is encrypted and securely transferred from GP practices to OPC through the NHS N3/HSCN network.

All pseudonymised de-identified data provided by GP practices to OPC is held securely in the OPC Quality Improvement Database, which is part of our service database.

OPC will continue to hold the practice data extracted for ongoing provision of its services and to make improvements to its services. A GP Practice can request at any time for its data to be removed from OPC’s databases, subject to any requirements on data retention as set out in the GDPR/DPA.

Research data

OPC holds de-identified patient data from GP practices who have agreed for the data they provide us to be held in our ethically approved research database, the OPC Research Database (OPCRD). OPCRD data is used for ethically approved and anonymous research purposes.

The value of OPCRD is that it provides anonymised data which is used to conduct research in real-life patients, and research which produces evidence relevant to real-life patient care. GP practices contributing data to OPCRD ensures that their local population is represented in research evidence informing scientific understanding, clinical guidance and best practice. The funds we get from OPCRD research is vital for us to continue providing quality improvement and research support services at no cost (free) to GP practices across the UK. To read more about how OPCRD continues to support research that is making a difference in science, clinical practice and patient care please visit OPCRD publications page.

OPCRD never receives or hold s any patient identifiable information such as name, date of birth, address, NHS or CHI or HCN number.

De-identified data in OPCRD is fully anonymised before it is used for research purposes in accordance with the Information Commissioner’s Office Anonymisation Code of Practice. This means that we do not know who the patients are. You can never identify a patient from the data or from any results or reports from the data. There is no possibility to identify a patient, even from a practice where that data originally came from.

To find out more about how OPCRD receives de-identified patient data from GP practices and provides only anonymised data for approved research, please refer to How OPCRD receives de-identified data from GP practices but provides anonymised data for approved research.

Data collected through observational research supported by OPC is always de-identified and is not personal data. OPC-supported observational research is where de-identified information is used for a study and it does not involve any patient participation.

Data collected through clinical research supported by OPC is always de-identified and is not personal data. OPC-supported clinical research or a clinical trial is where patients have been invited by their GP practice or doctor to participate in a study and the patients have consented to taking part in the study.

OPCRD is approved by the NHS Health Research Authority Research Ethics Committee (HRA REC reference: 15/EM/0150) to receive and provide data for scientific, exploratory and public health research.

All research requiring the use of anonymised data from OPCRD must have prior research ethics approval from 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 databases and registries. If the research involves patient participation, then ADEPT will require the study to also have HRA REC approval.

OPCRD data is never sold or provided for commercial purposes by pharmaceutical companies or for any marketing purposes. OPCRD data is only used for research which has been ethically and scientifically approved by ADEPT. The research must also have intent to publish, so the knowledge shared can benefit the wider scientific and healthcare world.

OPC will continue to hold the de-identified or non-identifiable practice data within OPCRD indefinitely for use in ethically approved research. A GP Practice can request at any time for its data to be removed from OPCRD, subject to any requirements on data retention as set out in the GDPR/DPA. It is however not possible to remove practice data from anonymised research data due to the fact that the data is anonymous and the practice or patients cannot be identified. Anonymised research data is provided from OPCRD to a researcher under a limited data licence, and must be deleted by the researcher following the data licence period which has been approved by ADEPT (in most cases one year).

How OPCRD receives de-identified data from GP practices but provides anonymised data for approved research

OPC is committed to protecting the confidentiality of patient data it receives from GP practices receiving the OPC quality improvement programme and research support services. OPCRD receives de-identified patient data from GP practices and provides only anonymised data for ethically approved research. De-identified data is data which has had personal information and sensitive information removed.

The process of how we provide anonymised research data from OPCRD is described below:

  • GP practice agrees to contribute their de-identified patient data to OPCRD.
  • GP practice is supported by OPC to set-up their electronic health record system to allow only patient data that has been de-identified to flow to OPC. This means patients cannot be identified from the data the GP practice sends to OPC. OPC never receives any patient identifiable information such as name, date of birth, address or NHS number from the GP practice.
  • Individual patients who have opted-out of their data being shared are excluded from any data sent by their GP practice to OPC.
  • OPCRD has ethics approval (HRA) to receive and provide patient data for research.
  • Researchers request to access data from OPCRD for a specific study. Access in this case means to receive an anonymised research dataset from OPCRD required for only that specific study, and not access to the entire OPCRD database.
  • All requests by researchers to access data from OPCRD are reviewed by an independent body – the Anonymised Data Ethics and Protocol Transparency committee (ADEPT).
  • Only research approved by ADEPT can receive an anonymised research dataset from OPCRD.
  • The de-identified data required for the approved research is then fully anonymised before it is provided to the researcher. Anonymisation involves removing any information which by itself or when combined with other information may possibly identify a patient. You cannot identify a patient from anonymised data or from any results or reports from anonymised data.
  • Researchers sign a contract called a Data Sharing Agreement, which ensures researchers adhere to strict terms and conditions governing how the data is used and how long they can hold the data.
data flow diagram

Lawful basis for data OPC hold

Quality improvement data

OPC does not hold personal data on patients.

Each GP practice receiving the OPC quality improvement programme and research support services enters into a contractual agreement with OPC, which allows OPC to extract, process, pseudonymise, de-identify, transfer and hold the data for the purpose of providing these services to the GP practice.

Research data

OPCRD does not hold personal data; all research data provided from OPCRD is anonymised in accordance with the Information Commissioner’s Office Anonymisation Code of Practice.

Statutory providers of secondary care data e.g. NHS Digital, NHS Wales Informatics Service, NHS Scotland Information Services Division, may process personal data as an accredited trusted third-party within the NHS when linking GP data with data from other sources.

The legal basis for processing personal data where applicable are:

  • Medical research and statistics – Article 6(e) and Article 9(2)(j) – for public interest and scientific research purposes.
  • Medicines and medical device monitoring – Article 6(e) and Article 9(2)(i) – for public interest in the area of public health

Your data rights under the GDPR/DPA

The General Data Protection Regulation (GDPR) and the Data Protection Act 2018 (DPA) provide every individual with data rights and these are:

  • the right to be informed about the processing of any data about you;
  • the right of access to see or receive a printed copy of any personal data relating to you;
  • the right to rectification i.e. to correct any material errors in the personal data we may hold about you;
  • the right to erasure i.e. where appropriate, to ask that all personal data about you is erased;
  • the right to restrict processing i.e. to ask that some or all processing ceases – this would generally involve you requesting this through your GP or through the National Data Opt-out scheme if you live in England, or withdrawing from a clinical research study directly;
  • the right to data portability – this only applies to data you have provided directly;
  • the right to object to and not to be subject to automated decision-making, including profiling. We do not have any automated decision-making.

As the data OPC hold is de-identified data (it is not personal data), we are not required to support the exercise of these rights. It is also not possible for OPC to support these rights as we have no means of establishing anyone’s identity from de-identified data we hold. You can exercise your data rights through your GP practice.

Any identifiable data of patients taking part in OPC-supported clinical research study is collected or processed with the patient’s informed consent at their GP practice. If you have questions about the use of your data in a clinical research study, please contact your GP practice who will hold records about your involvement.

Your right to opt-out of data sharing

You have the right to opt-out of the sharing of your confidential patient health information by your GP practice with OPC. Opting-out of sharing your health information will not affect the direct care that you receive, though it may affect how well the NHS plans and delivers services.

If you do not wish for your data to be collected, processed or used for any purpose including research and planning, please contact and inform your GP practice. Individuals in England can also opt-out of data sharing through the National Data Opt-out policy.

OPC Data Security and Protection Policies

If you have any queries or feedback about our data protection, or you have a complaint, please contact us:

Optimum Patient Care Ltd

5 Coles Lane, Oakington, Cambridge, CB24 3BA

Email:   dataprotection@optimumpatientcare.org

Phone: 01223 967 855

[Page last reviewed 29 November 2019]