Registries and national cancer intelligence

The following are examples of initiatives and projects that registries are currently involved in.

National Cancer Intelligence Network (NCIN)

The National Cancer Intelligence Network (NCIN) was launched in June 2008 in line with the commitments of the Cancer Reform Strategy, the current national cancer policy document for England. The Cancer Reform Strategy recognised that the collection, analysis and publication of high quality data on clinical outcomes was fundamental to the development of cancer services.

The NCIN comes under the auspices of the National Cancer Research Institute (NCRI) and is funded by the NHS and NCRI Partners. Cancer Registries are key partners in the NCIN. Other members of the Network include national NHS cancer organisations, clinical champions, health service researchers and a range of other interested parties (including the Office for National Statistics, National Clinical Audit Support Programme and NHS Information Centre). In England, the NCIN is part of the National Cancer Programme.

The National Cancer Waiting Times (CWT) initiative

NHS organisations in England are mandated to collect and report on selected elements of the patient’s pathway through referral, diagnosis and first treatment for the CWT initiative. This information is collated on a central, national database. Baseline data on expected volumes are provided by the cancer registries. Significantly, cancer waiting times data are also transmitted to the cancer registries, to speed the process of registration, to authenticate the completeness of the data and to reduce the overall burden of cancer data collection in the NHS.

The National Clinical Audit Support Programme (NCASP)

The National Clinical Audit Support Programme (NCASP) works in collaboration with a range of NHS organisations and professional bodies to provide the infrastructure for the collation, analysis and feedback of local clinical data to support effective clinical audits across the NHS. The overall aim of clinical audits is to improve patient outcomes by improving professional practice and the general quality of the services delivered.

NCASP manages the national clinical audits for heart disease, diabetes and cancer. There are currently five cancer audits:

National Bowel Cancer Audit Project (NBOCAP)

Data for Head and Neck Oncology (DAHNO)

Lung Cancer Data Audit (LUCADA)

Mastectomy and Breast Reconstruction (MBR)

Oesophago-gastric cancer

Access to high-quality, routine clinical data is essential for these audit projects and consequently cancer registries have an important part to play. The development of the National Cancer Dataset is also important to the success of the audits.

The National Cancer Services Analysis Team (NATCANSAT)

The National Cancer Services Analysis Team (NATCANSAT), which was established in 1996 and is funded through the National Cancer Action Team, provides in-house medical informatics services to the NHS. These services range from software application and website development to geographical data analysis, including involvement in cancer clinical audits.

The NATCANSAT website also provides access to the software that enables health-care professionals to collect data for the British Association of Surgical Oncology (BASO) Breast Unit database, Association of Coloproctology of Great Britain and Ireland ( ACP) Colorectal database and British Gynaecological Cancer Society (BGCS) Gynae database.

Cancer registries have close working relationships with NATCANSAT to undertake specific projects requiring consolidated information relating to incidence, mortality, hospital activity and clinical outcomes.

The Breast Cancer Clinical Outcome Measures Project (BCCOM)

The BCCOM project is supported by Breakthrough Breast Cancer and is being coordinated by the West Midlands Cancer Intelligence Unit in Birmingham. Data are primarily obtained from regional cancer registries before being validated by the responsible breast surgeon.

The aim of the project is to assess, across the UK, how symptomatic breast cancers are diagnosed and treated, in order to develop outcome measures to monitor performance against national standards.

The BCCOM Project is now in its 5th year.  A total of 61,900 breast cancer cases treated by 364 consultant surgeons have so far been submitted to the BCCOM Project.  A full summary of the cases included in the audit in terms of their characteristics and treatment is published every year in the BCCOM annual report which can be found on the BCCOM webpage.  Results are also presented at the UK Association of Breast Surgery (ABS at BASO) annual meeting.