Core - Linkage

These items are mandatory for every record in order to link patient records. To ensure that records submitted can be linked appropriately, key data fields must be completed for each record submitted. These are shown in the Core Linkage section.

There will be one linkage section completed each time the record is submitted.

Must be one occurrence per record (1..1).

* A combination of either ‘NHS Number’ and/or ‘Local Patient Identifier’ are mandatory for the schema. Both can be submitted, but a record cannot be submitted without at least one of these data items.

NHS Number

The 'NHS Number' is a unique identifier for a patient within the NHS in England and Wales. This will not vary between any organisations of which a person is a patient.

Notes:

• almost all patients should have an NHS Number, and this should always be included where available
• for those who do not have an NHS Number, the hospital number (Local Patient Identifier) must be provided

Local Patient Identifier

For linkage purposes, 'NHS Number' and/or 'Local Patient Identifier' are required. this is a number used to identify a patient uniquely within a health care provider. it may be different from the patient's case note number and may be assigned automatically by the computer system.

NHS Number Status Indicator Code

The NHS Number Status Indicator Code indicates the verification status of the NHS number provided.

Person Birth Date

The date on which a person was born or is officially deemed to have been born. This should be automatically linked via your local PAS or EPR system when you create a record for the first time.

Organisation Identifier (Code of Provider)

The ‘Organisation Identifier’ of the organisation acting as a health care provider (an6 not applicable to COSD). This is the 3 or 5-digit code of the organisation submitting the demographic details. This will therefore normally be either the organisation where the referral is received or the treating organisation.

Notes:

• there is a new code structure (ANANA) for new organisation identifiers allocated by ODS from 01 September 2020 onwards - codes issued prior to this date will not be converted
• details of changes to ODR codes can be found on the NHS Digital website

One of the following Cancer Pathway sections must be provided per submission.

Must be one of the following choices per record (1..1)

Pathway Choice - choice 1..1

Pathway Choice (Primary Pathway) - choice 1 

End of Pathway Choice (Primary Pathway) - choice 1

Pathway Choice (Non Primary Pathway) - choice 2

This is a new linkage section (using a choice) to help improve the ascertainment and data quality of the primary cancer pathway data.

Note:

• you can only create either a ‘Primary’ or ‘Non Primary’ cancer pathway within each record, and all items in this section are mandatory

Choice 1

Primary Diagnosis (ICD)

See diagnostic coding for details on coding and ‘Primary Diagnoses’ for the standardised definition of primary diagnosis. The primary diagnosis is normally agreed at the MDT Meeting where the patient is discussed.

ICD10 is the International Statistical Classification of Diseases and Related Health Problems (ICD) and is a comprehensive classification of causes of morbidity and mortality. The primary diagnosis is the main condition treated or investigated during the relevant episode of healthcare.

Notes:

• where the ICD10 code only has 3 characters, for example C01, please add “X” as a ‘packing digit’ to meet the validation rules (such as C01.X, C07.X, C73.X)
• in addition, the reporting format excludes the decimal CXX.X or DXX.X, all xml reports must be recorded as CXXX or DXXX

Tumour Laterality (CWT)

Identifies the side of the body for a tumour relating to paired organs within a patient (this refers to the side of the body on which the cancer originates). For the Central Nervous System, the definition for bilateral is ‘evidence that the tumour is crossing the midline’.

Notes

• bilateral Wilms’ tumour of the kidneys, ovarian tumours of the same histology and mesothelioma of pleura are treated as a single tumour
• all other bilateral tumours arising in paired organs should be treated as separate primary tumours and separate COSD records submitted for each
  • for example, one record with laterality ‘left’ and one record with laterality ‘right’

Date of Primary Diagnosis (Clinically Agreed)

This data item is mandatory for all new primary cancers as it is required for record linkage. Record the date where Cancer was first confirmed, or diagnosis agreed.

Date of Diagnosis can usually be determined by one of the following 4 methods. You must use the date from the method which provides the earliest confirmation of a diagnosis. This will normally be one of the following.

Pathology report:

• this would normally be the date of the biopsy or procedure that first diagnosed the cancer was performed
• in some cases, the date of the authorised pathology report confirming a cancer diagnosis could be used

Diagnosis confirmed at MDT:

• if the cancer is confirmed clinically (clinical decision or clinical investigation or pathology not yet authorised)
• then the date used should be that of the Multidisciplinary Team Meeting when the diagnosis was agreed by the clinical team treating the patient

Excision:

• for cases where the diagnosing investigation and treatment occurred within the same process (such as where an excision confirms and removes or partially treats a cancer), record the date of the excision as the date of diagnosis and date of first treatment
• all other treatments post this point would be classified as ‘Subsequent Treatments’

Other:

• for all other cases, record the date in which the clinical investigation took place
• or clinical agreement that confirms the diagnosis of cancer

Notes:

• this date must always be agreed by the clinical team if any confusion or uncertainty is present
• it is important that the Trust continues to submit their agreed ‘Date of Diagnosis’ based on the earliest clinically agreed date within the above framework

The NCRAS uses an internationally set of agreed algorithms to assign the ‘Date of Diagnosis’. As these dates are used for international benchmarking, they can be different from the agreed and submitted ‘Date of Diagnosis’ of the reporting Trust. These use the reported histological date (if present) as the gold standard, and this could supersede a clinical ‘Date of Diagnosis’ if reported within a given period of time.

This is a linkage section (using a choice), to help improve the ascertainment and data quality of the non primary cancer pathway data.

Notes:

• you can only create either a ‘Primary’ or ‘Non Primary’ cancer pathway within each record
• and all items in this section are mandatory

Choice 2

Date of Non Primary Cancer Diagnosis (Clinically Agreed)

This applies to recurrence, progression or transformation (on the non primary cancer pathway) only. Record the date where the non primary cancer diagnosis was confirmed or agreed. This will normally be one of the following 3 methods.

Pathology report:

• this would normally be the date when the authorised pathology report confirms a non primary cancer diagnosis
• although the date of the procedure can also be used if positive

Diagnosis confirmed at MDT:

• if the non primary cancer diagnosis is confirmed clinically (clinical decision or clinical investigation or pathology not yet authorised)
• then the date used should be that of the Multidisciplinary Team Meeting when the diagnosis was agreed

Other:

• for all other cases
• record the date in which the clinical investigation took place
• or clinical agreement that confirms the diagnosis of cancer

If a non primary route is being recorded, you now have a choice to make as to which pathway the patient is on. This would be agreed with the clinical team treating the patient (if unsure please check), it would be one of the following:

• Non Primary Cancer Pathway - Choice 1 - Recurrence
• Non Primary Cancer Pathway - Choice 2 - Progression
• Non Primary Cancer Pathway - Choice 3 - Transformation

It is expected that for each additional recurrence, progression, or transformation the patient is diagnosed with, a new record would be recorded.

Choice 1 - Non Primary Cancer Pathway Route – Recurrence

Additional details are required for every non primary cancer diagnosis record in order to ensure that the correct pathway route can be identified, and information can be correctly linked. The following is specifically for recurrences (choice 1).

Must be up to one occurrence per Non Primary Cancer Pathway if selected as choice (1..1).

Start of repeating section - Metastatic Type and Site 

May be multiple occurrences per CORE - Diagnostic - Non-Primary Cancer Pathway Details (Recurrence) (0..*)

End of repeating section - Metastatic Type and Site

Start of repeating item - Relapse - Method of Detection

End of repeating item - Relapse - Method of Detection

Original Primary Diagnosis (ICD)

This data item requires the original primary diagnosis to be recorded (if known). This allows for accurate alignment of a recurrence. This is particularly important where a patient has more than one primary diagnosis of cancer recorded.

Metastatic Type

Indicate the type of recurrence or metastatic disease diagnosed by the clinical team.

Metastatic Site

The site of the metastatic disease, if any, at diagnosis. More than one site can be recorded.

Notes:

• both Metastatic Type and Site within a multiple selection group, and both fields are mandatory within the group
• if there is more than one metastatic region, all can now be recorded correctly
• these do not apply to haematological malignancies

It is possible that some legacy data may not have all the required mandatory fields. The recommendation is for Trusts to update their data to meet the new requirements and improve/enrich their data submissions, or not upload the legacy data items in the new record (if that data is not available).

Palliative Care Specialist Seen Indicator (Cancer Recurrence)

Record whether the patient was seen by a palliative care specialist. This would be a member of the specialist palliative care team led by a consultant in palliative medicine for a recurrence of cancer.

Relapse - Method Of Detection

Indicate the method of detection for the patient’s relapse, more than one method can be recorded. The clinical value in the data item is around the early detection of recurrence.

Notes:

• this data item has a new data item number from v10, to align with other CORE data
• the schema specification has been updated to Required 0..*
  • therefore, more than one selection is now possible

Choice 2 - Non Primary Cancer Pathway Route – Progression

Additional details are required for every non primary cancer diagnosis record in order to ensure that the correct pathway route can be identified, and information can be correctly linked. The following is specifically for progressions (choice 2).

Must be up to one occurrence per Non-Primary Cancer Pathway if selected as choice (1..1).

Start of repeating section - Metastatic Type and Site 

May be multiple occurrences per CORE - Diagnostic - Non-Primary Cancer Pathway Details (0..*)

End of repeating section - Metastatic Type and Site

Progression (ICD)

This is now a mandatory data item. Where a cancer has progressed, record the ICD10 code of the original diagnosis. This will normally be agreed at the MDT by the clinical team.

Metastatic Type

Indicate the type of recurrence or metastatic disease diagnosed by the clinical team.

Metastatic Site

The site of the metastatic disease, if any, at diagnosis. More than one site can be recorded.

Notes:

• both Metastatic Type and Site within a multiple selection group, and both fields are mandatory within the group
• if there is more than one metastatic region, all can now be recorded correctly
• these do not apply to haematological malignancies

It is possible that some legacy data may not have all the required mandatory fields. The recommendation is for Trusts to update their data to meet the new requirements and improve/enrich their data submissions, or not upload the legacy data items in the new record (if that data is not available).

Choice 3 - Non-Primary Cancer Pathway Route – Transformation

Additional details are required for every non primary cancer diagnosis record in order to ensure that the correct pathway route can be identified, and information correctly linked.

The following is specifically for transformation (choice 3). There is also a multi-choice (current morphology) section within this group as highlighted below.

Must be up to one occurrence per Non Primary Cancer Pathway if selected as choice (1..1).

Current morphology choice 1..2

Choice 1 - Current morphology

End of Choice 1 - Current morphology

Choice 2 - current morphology

Start of section - current morphology 

May be one occurrence per transformation

End of repeating section - metastatic type and site

End of choice 1 - current morphology

End of current morphology

Original Morphology (ICD-O-3)

Record the morphology ICD-O-3 code of the original diagnosis (if known). This will normally be agreed at the MDT by the clinical team.

Original Morphology (SNOMED)

Record the morphology code of the original diagnosis (if known). This will normally be agreed at the MDT by the clinical team.

Important note:

• the next 3 data items form a 2-choice menu and at least one of the following choices must be provided per Transformation (1..2)

Choice 1

Morphology (ICD-O-3) Transformation:

The morphology code for the transformation of the cancer as defined by ICD-O-3. This can be recorded as well as or instead of ‘Morphology (SNOMED) Transformation’.

Note:

• this is a mandatory data item

Choice 2

Morphology (SNOMED) Transformation:

This is the transformation diagnosis using the SNOMED International / SNOMED CT code for the cell type of the tumour recorded as part of a Cancer Care Spell. This can be recorded as well as or instead of ‘Morphology (ICD-O-3) Transformation’.

SNOMED Version Current (Transformation)

The version of SNOMED used to encode ‘Morphology (SNOMED) Pathology’ and ‘Topography (SNOMED) Pathology’.

Note:

• both ‘Morphology (SNOMED) Transformation’ and ‘SNOMED Version Current (Transformation)’ are now a multiple selection group and both data items are mandatory within the group