Using NDRS data for direct care

National Disease Registration Service (NDRS) data is sometimes used to support direct care. This means it can be shared with healthcare professionals and the health service to support activities that directly contribute to the prevention, diagnosis and/or care and treatment of an individual with cancer, pre-cancer, a congenital anomaly, or rare disease.

The term ‘direct care’ is defined as a clinical, social or public health activity concerned with the prevention, investigation and treatment of illness and the alleviation of suffering of individuals (all activities that directly contribute to the diagnosis, care and treatment of an individual). It includes:

• supporting individuals’ ability to function and improve their participation in life and society 
• the local audit/assurance of the quality of care provided 
• the management of untoward or adverse incidents
• the measurement of outcomes undertaken by one or more registered and regulated health or social care professionals and their team with whom the individual has a legitimate relationship for their care

It does not include research, teaching, financial audit, service management activities or risk stratification, which are often referred to as indirect care purposes. Most of the work the National Disease Registration Service (NDRS) and its partners undertake using the data held in the disease registers relates to indirect care but there are a few situations where this is not the case.

In practice, the use of identifiable to support direct care means that the data we collect at NDRS can be shared with healthcare professionals and the health service to support activities that directly contribute to the prevention, diagnosis and/or care and treatment of an individual with cancer, pre-cancer, a congenital anomaly, or rare disease.

Identifiable patient data is only shared with the strictest of controls and only when all the requirements for accessing patient identifiable data are met.

There is more information about how we keep patient data safe on our website.

For more information on direct and indirect care purposes see the NHS Digital guide to confidentiality in health and social care: references; section 10: Using health and social care information – direct care and indirect care purposes.

Information about you is collected and shared with NDRS as part of the process of disease registration. In some specific scenarios where there is a clear link to support the direct care of individuals, NDRS data is used to help provide the most appropriate advice, investigations, treatments, and care.

The following are examples of how data collected by NDRS is used for direct care purposes:

Breast Screening After Radiotherapy Dataset (BARD)

The Breast screening After Radiotherapy Dataset (BARD) is a partnership programme with NDRS, The Christie NHS Foundation Trust and The University of Manchester. NDRS data is used to identify women in England who have received radiotherapy involving breast tissue when aged between 10 to 35 years, who have a subsequent increased risk of breast cancer. Using BARD all patients who are at increased risk of breast cancer following radiotherapy are referred into the NHS Breast Screening Programme (BSP) in line with national guidelines. It is also helping to ensure that patients are provided with the relevant information about the risk of breast cancer after radiotherapy, breast screening and research in the field.

Read more about this work on the BARD webpage.

You can also read more about the BSP for women at higher risk of developing breast cancer on the GOV.UK website.

Lynch syndrome register

People with Lynch syndrome (LS) have an inherited predisposition to colorectal and endometrial cancers, as well as other tumours including upper gastrointestinal cancer. NDRS collects data from Clinical Genetics Services on all patients identified with Lynch syndrome and shares this with the National Bowel Cancer Screening Programme to ensure timely access to high quality colonoscopic surveillance for people in this higher risk group.

The Lynch syndrome website page provides more information about our work in this area.

Genetic enquiries

Data held by NDRS is used to support NHS clinical genetics services by offering a service to verify cancer diagnoses within families. Without this it would not be possible to accurately assess familial cancer risk and offer screening and/or genetic testing to appropriate individuals.  Confirmation of family history is required before pre-symptomatic genetic testing can be offered to appropriate individuals.

For more information see the website page on genetics enquires.

You can ‘opt out’ if you do not want your data to be held on the cancer, rare disease or congenital anomaly register. This would include opting out from your data being used for direct care purposes, including but not limited to the examples given above. 

Find out more about opting out of disease registration on the opt out page.