The English cancer registries gather patient-identifiable data to support cancer epidemiology, public health, service monitoring and research. This data is collected under legal permissions granted to Public Health England (PHE) that were initially included under Section 60 of the Health and Social Care Act 2001 and more recently Section 251 of the NHS Act 2006. Renewal of this approval must be sought annually from the Confidentiality Advisory Group of Health Research Authority. Details of our current approval can be found on the HRA website.
Recognising the extraordinary privilege of Section 251, the cancer registries have very strict policies approved by PHE and HRA that cover data collection, storage and release. These policies define how data is collected, the requirements for the storage environment, the contractual arrangements for employing staff and the approvals required for any release.
Strongly Pseudonymised Patient information is securely shared by NHS Business Services Authority with Public Health England to allow them to fulfil the Secretary of State for Health’s statutory duties to protect and improve the health of the population of England. Patients can only be identified where Public Health England have the legal power to do so. This includes maintaining Cancer patient registers, monitoring rare or infectious diseases and also congenital anomalies.
Who handles the cancer registration data?
Cancer registry staff are trained to handle sensitive patient data and to understand the importance of patient confidentiality. They are employed by Public Health England, an Executive Agency of the Department of Health and make up the National Cancer Registration Service (NCRS).
What we collect and why
PHE is responsible for a range of public health functions that support the safety and quality of public health and healthcare across England. Many of these require that we collect, hold and analyse patient-identifiable information. Specific data that we collect includes infectious and non-infectious disease surveillance, cancer registration information, congenital anomaly and rare disease registration, cancer and non-cancer screening and drug and treatment monitoring.
PHE has been granted permission by Parliament to collect this data without the need to seek consent from individual patients. We recognise that this is a significant privilege and we are subject to very strict controls on how we store the data, how it used and who has access to it.
Data confidentiality and security
Protecting patient identification to ensure that confidentiality is maintained is essential. Only a limited number of staff have access to identifiable data – and only when this is needed to ensure data quality or investigate specific incidents. This specialist group of staff is trained and located in secure areas across the PHE estates.
We do analysis of the data we collect but whenever possible these are performed on data where the identifiers (name and address) have been removed. If an analyst requires access to patient-identifiable information for example to check that the accuracy of a record they must justify the need to see this information and seek special permission. A record is kept on the system to know who has looked at the data.
There are very strict controls about the sharing of any of the data we hold. No patient-identifiable information is shared unless we have patient consent to share it or specific permissions given from a valid research ethics committee. The Medical Director as Caldicott Guardian must formally approve any release of identifiable or potentially identifiable data. We only release sensitive data if all these conditions are met and the data recipient must have appropriate methods for data storage and only hold the data for the period of their study.
Engaging patients, charities and public
We are very proud of what cancer registries have done for patients with cancer in England and we want people to know about why we collect the data, how it is processed and why it is needed.
We regularly engage with patients and cancer charities to explain what we do and why we need patient identifiable data, we seek their advice on how we might improve and we ask for their support. For example, the English Cancer Registries have for the last ten years provided leaflets for patients to all oncology departments explaining what cancer registration is, why it is important and how a patient, should they wish, can opt out. A new version of this leaflet has been produced in partnership with CR-UK (see above right) to reflect the move to a single new National Cancer Registration Service; we have held focus groups with patients to help us get the message and tone of the leaflet right.
The National Cancer Intelligence Network (NCIN) has also worked directly with patients, patient groups and charities. Each of the NCIN clinical site-specific reference groups has patient representatives and charities. Every year NCIN organises a national conference of over 500 delegates more than half of whom are patients – we use the conference to show how the data we collect makes a difference to cancer care across England.
Patient access to their own data
Any patient who wishes can have a copy of their own data that we hold on the National Disease Registers. We provide this through your GP or another clinician to ensure that there is a check that the request is genuine and so that there is healthcare expert who can explain anything that is unclear or technical. For the National Cancer Registration Service, in partnership with Cancer Research-UK and the BrainsTrust we are piloting a patient portal through which a patient can access and contribute to their registry records (see https://portal.myregistry.org.uk/users/sign_in). Available for brain tumour patients at the moment – we will extend coverage to all tumour sites in time.
Opt-out of cancer registration
For the disease registers where data is collected for a range of public health uses patients have the absolute right to opt-out. To find out more details please see the Removal Request page. In order to process your request we do need to have the request in writing. In the last 15 years fewer than 10 patients have opted out.
We are very grateful to all the patients, their families, cancer charities and teams across the healthcare system for the support they have given to Cancer Registries over many years.