A Single Cancer Registration System

for England

Andrew Murphy Registry Information Liaison Manager

Eastern Cancer Registration and Information Centre Cambridge, England

encore

Overview

• Brief History of Cancer Registration in England

• Our Vision and Blueprint for Change

• How Electronic Data Sources Feed into EnCORE

• Difficulties and Achievements

• Goal

• Benefits

• The Future

encore

• 1926 Radium Act

• 1939 Cancer Act

• 1948 National Health Service (NHS) was

founded

• 1966 NHS Act

• 1988 Data Protection Act

• All Population based against Hospital Based

• 8 Regional Cancer Registries in England

Brief History of Cancer Registration

in England

encore

Vision

• To provide near real-time comprehensive data

collection and quality assurance over the entire cancer

care pathway on all patients treated in England.

This can then be used as a resource for..

• Patient care

• Quality, Safety and Performance Management

• Audit, Research and Outcome Monitoring

encore

English National Cancer Online

Registration Environment (EnCORE)

• The EnCORE system was developed by the Eastern

Cancer Registration and Information Centre in Cambridge

• Automates rapid processing of multiple local and all

national data sources to provide Registration Officers

(Registrars) with the information they require.

• Provides rapid and direct feedback of data to clinical

teams to enhance data quality.

• Designed to hold all items in the new National Cancer

Dataset and was written for and with the direct input of

registration staff, rather than imposing an off the shelf

product (square peg in round hole!)

encore

English National Cancer Online

Registration Environment (EnCORE) - cont

• Allows the collection of all the relevant data for multiple

tumour stages to be determined at all points along the

care pathway.

• Coding in ICD-O3 with back compatibility to ICD-10 & O2

• Data quality control and validation included for ICD codes

and stage-specific data.

• Support for real-time surveillance, cancer audit and

analysis with tailored snapshot datasets for external

analysis and research.

encore

Data sources - patient-level data

National Feeds

Local Feeds

National Pilots Encore

Cancer Waiting Times

Chemotherapy (from April 2012)

Radiotherapy Data

National PET-CT imaging

Cancer and non-cancer deaths card information

National cancer audits - Lung,

Head and Neck, Breast and Bowel

Cancer screening

programmes - Bowel, Cervix

and Breast

Patient administration

systems

Pathology full-text reports

Local imaging systems

MDT data

Somerset, Infoflex etc

Local clinical data

systems

CRUK Stratified Medicine

(Sept 2011)

Difficulties & Achievements

• Difficulties

• There are 8 regional Cancer Registries all working differently, with different priorities set against common standards

• The timescale of 18 months from start to completion is very challenging

• Changing long standing cultures and ways of working is always difficult

• De-duplicating thousands of records prior to each migration was a top priority

• Reassuring registration officers (registrars) that this did not mean less jobs, just a new way of working

encore

Difficulties & Achievements

• Achievements

• Already migrated 40% within first 9 months

• Using teams from newly migrated registries to train the next registries to be migrated

• Learning from mistakes to improve future migration

• Adopting best practice from all 8 English Cancer Registries

• Utilising the best skilled people to enable a better balanced process and system

• One system that everyone uses across England

encore

Goals

• To automate and provide manual reconciliation of

mismatched data

• The ability to abstract data from complex or poorly

structured records

• Coding – ICDO3, SNOMED and OPCS etc

• Very high quality tumour staging

• 42 tumour sites routinely staged (>95% tumour stage held)

• Raw staging data held where possible

• Multiple stages derived from different sources - imaging, pathology, MDT, clinical etc.

encore

Benefits

• To provide a single way of working across England

• To create the worlds largest population based cancer

registry with

• A total population base >56 million

• 350,000 new tumours recorded every year

• To include molecular diagnosis through the Stratified

Medicine project on patients and link these to cancer

registration

• Provide near real-time analysis and returning this data

back to clinical teams within months of receipt at the

Cancer Registry

encore

Future

• A highly detailed, population based database, holding

>50 years of cancer records as a resource for:

• Driving clinical improvement & outcome measurement

• To monitor efficacy of treatment protocols

• Identifying family members with a genetic risk of cancer

• Using new and innovative ways of providing quality

data analyses through:

• Instant Atlas

• TNQL

• Patient Care Pathway Mapping (1) - i2

• Patient Care Pathway Mapping (2) - EnCORE Solution

encore

Instant Atlas encore

TNQL

Tumour Near-natural Query Language

encore

Using i2 – a novel informatics tool

• How does i2 work?

• i2 allows visualisation of each part of the patient journey

• Patient at one end

• Hospital at other end

• Event linking them:

D – Diagnosis

S – Surgery

C – Chemotherapy

R - Radiotherapy

encore

Oesophageal Patient Pathway

• Are patients

following local

treatment

guidelines?

• i2 provides the

ability to build this

complex picture

36%

21%

29%

14%

C15 - 2007 Cases 'Diagnosis Only'

Unfit to treat

Stent

No record of treatment

Biopsy only

7% 7%

22%

50%

7% 7%

C15 - 2008 Cases 'Diagnosis Only'

Unfit to treat

Asymptomatic

Stent

No record of treatment

Pt declined

Watch & Wait

encore

Mapping Patient Care Pathways (2)

encore

Conclusion

• By the end of 2012 we will have a single cancer

registration system (EnCORE) being used across the

whole of England

• This will provide a population base of >56 million

• 350,000 new tumours registered every year

• Ability to link molecular diagnosis to cancer registration

cases

• Return real-time data back to clinical teams within

months

• Provide powerful data for national analysis and

international benchmarking

encore

Big thank you to all the staff at my Registry for their help,

support and dedication to the job.

Any Questions?

• Or email me

• andrew.murphy@ecric.nhs.uk

• andy.murphy@nhs.net (secure – data transmission)

encore