ycn breast educational meeting 2015- cancer registration data caroline brook

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National Cancer Registration Service (NCRS): where does the data come from and how can you help? Caroline Brook, Head of Cancer Registration, National Cancer Registration Service - Northern and Yorkshire 30 September 2015

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Page 1: YCN Breast Educational Meeting 2015- Cancer Registration data Caroline Brook

National Cancer Registration Service (NCRS): where does the data come

from and how can you help?

Caroline Brook, Head of Cancer Registration,National Cancer Registration Service - Northern and Yorkshire

30 September 2015

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National Cancer Registration Service

National Cancer Registration Service (NCRS)- Single national service formed as part of the transition to Public Health

England (PHE) in 2013 from 8 predecessor cancer registries.- Sits within the Chief Knowledge Officer (CKO) Directorate- National Director, Dr Jem Rashbass- Retained 8 local offices (responsible for local data providers)- Operates on a single national IT system – Encore

Member of the UKIACR (UK & Ireland Association of Cancer Registries)

Member of European Network (ENCR) and International Association (IACR)

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National Cancer Registration ServiceData Transfer Partnership Agreements (DTPAs)- NCRS has a signed DTPA with every data provider (mostly Acute Trusts) which outlines requirements for data provision/access for the purposes of cancer registration.

Cancer Outcomes and Services Dataset (COSD)- All data providers to supply data in the standardised COSD format within 25

working days of the end of a month.- NCIN webpages give all details relating to dataset and data items

http://www.ncin.org.uk/collecting_and_using_data/data_collection/cosd- Core data items and site-specific

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COSD Conformance reporting- All datasets received by NCRS are logged in and loaded onto Encore.- These data are then reported directly via the CancerStats system (including

pathology). (Previously a system called COSD Conformance Portal).- This will include any refreshes of the data up to a point when it is frozen.- Produces reports based on data submitted directly from Providers (Level 1

and 2 reports).- Produces reports on finalised registrations after a further period of time

(Level 3 reports).- Will produce site-specific clinical headline indicators (CHI) during 2015.- Can request a login from local NCRS team.

https://nww/cancerstats.nhs.uk

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Data Received: MDT

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Data Received: COSD format

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Data Received: Pathology

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Diagnoses by Month- Invasive breast, (L2.1a)

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Cases discussed at MDT- Invasive breast, (L2.1k)

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Cases at MDT with full stage- Invasive breast, (L2.2b)

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Staging Performance: NCRS NY

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ICBP Sites 2012 2013 PHOF Sites and Cervix Breast 92% 93% Breast

Colorectal 87% 91% Colorectal

Lung 91% 93% Lung

Ovary 89% 91% Ovary

Prostate 80% 91% Prostate

87% Kidney

88% Bladder

94% Melanoma

93% Endometrium

88% NHL

97% Cervix

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Breast staging: Q1 2014 by CCG

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(work on-going – not final position)

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Current targets- 2013 registrations were completed at the end of January 2015 with PHOF

sites (+ cervix) staged at 81% for England.

- Over half way through processing of 2014 data and will aim to stage all stageable tumours and finalise by 31 December 2015.

- Have commenced near real-time processing of 2015 data, January – April processed for whole of England. This will allow a large proportion of the data to be available sooner for analysis (with appropriate caveats, i.e. incomplete staging and treatment). We’re just beginning to look at this.

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Whose responsibility?Data providers have a responsibility to supply timely, accurate and complete

cancer data. (Ideally with at least 70%+ staging.)

BUT…

…in partnership with NCRS, who will help to monitor and provide feedback/advice in order to continually improve the data.

The better the data coming into NCRS, the more opportunity NCRS will have to further improve timeliness and also concentrate on more complex data quality improvement projects, such as working with clinical teams to identify and code rarer cancers in a more meaningful way.

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How can you help?- points for consideration.Do you get involved in collecting/coding data within the MDT meeting?

Do you carry out any validation of data before it is submitted?

Do you access your clinical system and use your own data, i.e. have confidence that it is correct leaving the Trust?

Are you familiar with how COSD is collected in your Trust and how it is submitted to the NCRS and by whom?

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Clinical interest in the data collection process always improves accuracy.

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Contact details:-

Caroline Brook

Head of Cancer Registration, NCRS NY

[email protected]

0113 2068270

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