A core national cancer dataset (CNCDS)

The National Cancer Registry, following discussions with the National Cancer Control Programme, has begun the process of developing a core national cancer dataset (CNCDS) which would serve a range of purposes, including cancer registration, service planning and evaluation and would support some aspects of clinical audit and research. This database would not preclude the development of more specialised or more detailed datasets, but should form the core of such datasets.

There is a growing recognition of the need to base cancer control policies on accurate, detailed and timely information on cancer management and outcomes. Traditionally, most national population-based information on cancer in Ireland has come from cancer registration, which has the strengths of being comprehensive, accurate and population-based. However cancer registration is retrospective and has, in the past, centred on producing accurate reports a year or more after the year of diagnosis. Registration often exists in parallel to, and in isolation from, the clinical and administrative systems in which the primary cancer data is first recorded. It is therefore sometimes seen by clinicians as not serving their specific needs, and, for this reason and others, alternative cancer data collection systems have developed in some Irish hospitals, usually in an ad-hoc fashion. This has led to duplication of effort, inconsistencies and gaps in the availability of information. With the development of the National Cancer Control Programme it is obvious that an integrated cancer information system, incorporating a national cancer dataset, is needed to provide detailed timely and consistent information across the country. This would ensure that the care received by cancer patients is consistent and in conformity with national guidelines; that information on trends in incidence, survival and mortality is readily available for planning and evaluation and that inequalities in the delivery or outcome of services are quickly identified.

Recognising these needs, the National Cancer Forum recommended that

A minimum national dataset should be collected for all cases of cancer. This will ensure that standard, comprehensive and appropriate information is collected on all cancers. It should reflect similar developments in related areas, such as the minimum dataset for palliative care. It will require information...to include risk factor surveillance (including lifestyle-related risk factors), as well as process and outcome of care indicators relating to all aspects of care from prevention to palliation

(A Strategy for Cancer Control in Ireland, National Cancer Forum. Department of Health and Children 2006.)

The National Cancer Registry, following discussions with the National Cancer Control Programme, has begun the process of developing a core national cancer dataset (CNCDS) which would serve a range of purposes, including cancer registration, service planning and evaluation and would support some aspects of clinical audit and research. This database would not preclude the development of more specialised or more detailed datasets, but should form the core of such datasets.

PURPOSE OF THE DATASET

A core national cancer dataset should combine the standard registration dataset with a richer clinical dataset and should include the minimum amount of information needed to:

  • Define the patient pathway for each cancer episode
  • Identify specific sub-groups of patients
  • Describe the management of each cancer
  • Capture important outcomes
  • Generate survival information.

The core national cancer dataset (CNCDS) will:

  1. Provide a nationally agreed and consistently defined set of data items which are pertinent to cancer care and cancer control.
  2. Replace and greatly expand on the current cancer registration dataset.
  3. Contain mainly items concerned with the clinical management of the patient. Information on staffing and structures, on patient experience, on contacts with non-clinical staff and similar matters has not been included in the dataset. This does not rule out the possibility that some of these items may be included once the initial dataset has come into routine use.
  4. Form the basis of a core dataset to be used in all cancer centres, though it is acknowledged that not all data items will be able to be collected initially. However, those that are included will be recorded consistently by all cancer centres.
  5. Not preclude the development and use of more detailed databases for specialist use, for local audit or other purposes. However, such additional datasets should be compatible with the national dataset and international definitions; as far as possible they should use variables from the national dataset and should not use alternative definitions or classification systems.
  6. Be subject to continuous review and amendment; it is not intended to be fixed and final.

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