Updated: Added details of the Review of Informed Choice workshops.
The National Cancer Registration and Analysis Service (NCRAS) is run by Public Health England (PHE). It is responsible for cancer registration in England to support cancer epidemiology, public health, service monitoring and research.
Cancer registration
The NHS has made great strides in recent years in understanding what causes cancer and how best to diagnose and treat it. This work can only continue to progress if there is accurate and complete information about the people who are developing cancer. This information is collected through a process called cancer registration.
Cancer registration is the systematic collection of data about cancer and tumour diseases. In England, this data collection is managed by NCRAS. Every year, NCRAS collects information on over 300,000 cases of cancer, including patient details (including their name, address, age, sex, and date of birth), as well as detailed data about the type of cancer, how advanced it is and the treatment the patient receives.
So NCRAS can identify every cancer and ensure complete case ascertainment, it uses a wide range of data sources. These include data sent to NCRAS from:
histopathology and haematology services
medical records
radiotherapy departments
hospices
independent hospitals
screening services
death certificates
GPs
other UK cancer registries
By obtaining data from multiple sources and then matching and merging them as required, NCRAS can build a complete picture of the incidence and prevalence of cancer in England, as well as understanding how cancer patients are diagnosed, treated and their outcomes.
NCRAS also link this information to other health information routinely collected by the NHS (such as information on attendances in hospital) and patient experience surveys, such as Patient Reported Outcome Measures and the National Cancer Patient Experience Survey.
Permission to collect cancer data
NCRAS has been granted specific legal permission to collect information about cancer patients without the need to seek consent. This permission was granted to PHE through Section 251 of the NHS Act 2006. Every year, this support is reviewed by the Confidentiality Advisory Group of the Health Research Authority (HRA). Details of our current approval can be found on the HRA website.
Recognising the extraordinary privilege of Section 251, the cancer registry has very strict policies 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.
How cancer registration data is used
The benefits of the data collected by the cancer registry have been considerable. However, historically most of these occurred sometime after a patient’s diagnosis and treatment. As the cancer registry data collection becomes more timely, it is increasingly being used to look at the quality of services and the early effects of treatments. As such, this may affect patients directly.
Below are examples of how cancer registration data is being used to support cancer epidemiology, public health, service monitoring and research.
Monitoring cancer rates
Cancer registration is the only way we can keep track of how many people are getting cancer and what types of cancer they have. It tells us how many people are diagnosed with cancer each year, how many people are living with cancer at any one time, and the survival outcomes for people with different types of cancer.
We track these figures year on year, so we can see if the number of people being diagnosed with cancer is going up or down, and if people are surviving for longer. We also use cancer registration data to compare how the NHS performs compared to other health care systems.
Improving cancer care
Cancer registration data is vital to ensure the NHS can follow up the long term effects of a treatment that may have been given many years earlier. Cancer registration data enabled the NHS to contact women treated with radiation for Hodgkin’s disease (a cancer of the lymphatic system) when they were younger, because they might have an increased risk of breast cancer. The treatments for Hodgkin’s disease have been changed as a result.
Cancer clinicians regularly assess the quality of outcomes for their patients receiving specific treatments; in order to make sure everyone receives the best care clinical teams are encouraged to study what happens to the patients that they treat. This is called clinical audit and is an important method for making sure that care and treatment is the best that it can be; the registry is routinely asked by clinicians to provide details of their patients who have received specific care.
Aiding cancer research
Cancer registration also fuels research into cancer, helping scientists investigate possible causes of cancer and improve treatments for the disease. The cancer registry can be used to identify patients who might benefit from new treatments or clinical trials. New treatments for cancer and related conditions are being developed all the time and if one of these is being tested or becomes available we may be asked to provide details of suitable patients to a doctor or researcher working on these new treatments.
Genetic Counselling
The cancer registry works closely with all the NHS regional clinical genetics services to ensure that accurate genetic counselling can be offered to people with a strong family history of cancer. Although most cancer is not inherited, some people have an altered gene that gives them a very high risk of developing certain types of cancer. Families with these ‘cancer predisposition genes’ typically have many family members who develop similar types of cancer at a younger age than would normally be expected. For example, around 5% to 10% of breast cancer is thought to be related to hereditary factors.
By providing definitive details of cancer diagnoses within a family, we can help clinical geneticists and genetic counsellors to work out whether someone’s cancer risk is increased, and to tailor extra screening to that person and their relatives. We can only do this because NCRAS has such complete records going back over many decades. Last year, the cancer registry had over 20,000 requests from clinical geneticists on behalf of the patients and families in their care.
Confidentiality, security and data sharing
It is essential to protect patient data and ensure that confidentiality is maintained. Only a limited number of NCRAS staff have access to identifiable data, and only when this is necessary to ensure data quality or investigate specific incidents. This specialist group of staff are highly trained and located in secure areas across the PHE estates.
Alongside collecting data, the cancer analysts in NCRAS coordinate and develop analysis and intelligence to drive improvements in prevention, standards of cancer care and clinical outcomes for cancer patients; such as understanding how many cancers are diagnosed in an emergency setting, compared to a GP referral.
Whenever possible, this work is performed on de-identified data (where information that could directly identify an individual 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.
All information collected by NCRAS is kept on secure servers on the NHS network, and PHE has a legal requirement to make sure information is stored and used correctly under the Data Protection Act (1998).
Access to cancer registration data
Formal requests for release of cancer registration data can be made to the PHE Office for Data Release (ODR). The ODR considers all requests for access to the data on a case-by-case basis and works with the applicant to assess whether their needs can be met with anonymised or aggregate data, or whether the project can be revised in a way that allows for anonymised or aggregate data to be used.
Cancer registration data will only be approved for release where the data is being used for a medical purpose. These permitted medical purposes are described in the Health Service (Control of Patient Information) Regulations 2002 and include:
surveillance
clinical audit
service evaluation
ethically approved research
genetic counselling
Information that can be used to identify an individual will only be released to those providing care (such as your hospital or doctor) or to organisations that:
can evidence explicit informed consent
have been granted very specific legal permission to have this information under Section 251
Details of all the data released by the registry are published in the PHE Data Release Register.
Patient access to their own data
Any patient can request access to a copy of their own data held by the NCRAS. These requests are called ‘subject access requests’.
When NCRAS receive a subject access request, the information it holds will be provided back to the patient through their GP or another clinician to ensure that the request is genuine and that there is a healthcare expert available who can explain anything that is unclear or technical.
Subject access requests can be made in writing to:
Director
National Cancer Registration and Analysis Service
Public Health England
Wellington House
London
SE1 8UG
The Patient Portal
In collaboration with patients, Cancer Research UK, the brain tumour charity brainstrust, and healthcare professionals, NCRAS has been developing a patient portal through which a patient can access and contribute to their registry records. Patients can view various types of information, including reports on tissue samples and scans, data on radiotherapy and chemotherapy and information about their attendance at hospital and treatments. Alongside this, the portal has a quality of life tool, space for users to add their own notes, keep a list of contacts and directory of links to helpful information about support, treatment, clinical trials and research.
The Patient Portal is available for brain tumour patients at the moment. We will extend coverage to all tumour sites in time.
Opt-out of cancer registration
The benefits of the data collected through cancer registration have been considerable and we are grateful that nearly everyone with cancer is prepared to share their data with the cancer registry.
Patients can ask NCRAS to remove all of their details from the cancer registry at any time. Opting out of the cancer registry won’t affect the patient’s immediate treatment at their hospital or GP practice, but there may be occasions in the future when the data that is held by NCRAS can be used to assist in their care or that of a close relative.
If patients opt-out of the cancer registry, it may not be possible to contact individuals identified as being at risk in future, such as when an increased risk of breast cancer is identified in women treated for Hodgkin’s disease using radiotherapy. These are often called ‘patient notification exercises’ or ‘tracing exercises’.
Less information might be available to support relatives to help them understand their family’s history of cancer and their risk of developing the disease. This information is offered through genetic counselling services where people are concerned that their family history may put them at high risk.
Requests to opt out of cancer registration should be made by email or by writing to:
Director
National Cancer Registration and Analysis Service
Public Health England
Wellington House
London
SE1 8UG
World class cancer outcomes
In July, the independent Cancer Taskforce published their strategy setting out how we in England could achieve the very best cancer outcomes by 2020.
The report identifies strategic priorities, where PHE’s programmes contribute directly to improving outcomes. The priority areas are:
prevention and public health
early diagnosis
patient experience
living with and beyond cancer
investment in a high-quality, modern service
commissioning, accountability and provision
The PHE Cancer Board, chaired by the Chief Executive, provides strategic leadership across the organisation, to ensure that we deliver on recommendations from the Cancer Taskforce strategy.
Help us improve cancer registration information
Cancer Research UK and Macmillan Cancer Support have published a Review of Informed Choice which tries to better understand how aware people are of cancer registration and the work of NCRAS. One key recommendation is to review the existing information available to patients and public, such as the cancer registration information leaflet.
To ensure the information needs of people recently diagnosed with cancer are met, we are inviting people with experience of living with or caring for someone with cancer to a series of workshops to look at this in more detail. The workshops will provide an overview of what we do, look at the current information materials and ask how these can be improved. Other ideas and suggestions on how to increase awareness will be explored to inform our future plans.
To find out how you can take part please email Aileen.Guyatt@phe.gov.uk.
Resources
If you have any questions about cancer registration, you can get more information by:
asking your doctor.
visiting the Cancer Research UK website
visiting the cancer registration website
For any questions on cancer, speak to one of Cancer Research UK’s nurses on freephone 0808 800 4040 (9am to 5pm, Monday to Friday).