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Cancer Outcomes and Services Dataset
What is COSD?
Implications for Providers and Networks
17 years ago....
...Cancer registration and careful monitoring of
treatment and outcomes are essential...
Calman-Hine 1995
.....“Our aspiration is that England should achieve
cancer outcomes which are comparable with the
best in the world”
Improving Outcomes: a Strategy for Cancer, 2011
Why are we doing this – the
impact of information?
31 Days - CWT
Why are we doing this – newer
Information?
Routes to Diagnosis
PCT 3
Source: CIS, Date
All PCTs
2006
2016
Here commentary about assumptions made in projections
1995
Episodes by PCT (not normalisied) - LUNG
Elective
Non-elective
Choose PCT
Trust 4
Comments: …
Comments: …
1
1
2006
3
£ / FCE
PCT 1
PCT 2
PCT 3
All PCTs
Source: HES, Date
% costs due to excess bed-days
100%
Planned expenditure of current drugs
PCT 1
All PCTs
Comments: …
T1
SHA 3
T3
Source: CWT, CIS, Date
PCT 2
pCT 3
Data
LCT2
LCT 3
LCT1
User notes
Add to basket
# not referred as TWR - All cancers
PCT1
PCT
Rate of
% success
quitters by quitters at 4
100,000 pop
weeks
Zoom up
Cost per
patient per
annum (£)
PCT 1
PCT 3
PCT 2
Data
User notes
# TWR with cancer diagnosis - All cancers
PCT3
PCT1
PCT2
62 day
trend
% TWR with
Cancer
Diagnosis
In trust and
transfer
breakdown
Trend % of TWR with cancer diagnosis
PCT1
100%
All cancers - PCT1
PCT
PCT 1
PCT 2
PCT 3
In Trust
treatment
England
Trust
transfer
July
Aug
% of TWR meeting Standards - All cancers
PCT1
%
All cancers (2006)
Jul
Comments: …
62 day cases breakdown – all cancers
Notes
Aug
PCT
Jul
England
Aug
Sept
Source: HES Date
Jul
C
Aug
Sept
Source: CWT, CIS, Date
All PCTs
Comments: …
# not referred as TWR
Assumptions: England population = 55 million, Network population = 1m, PCT population = 100,000
% admissions without a diagnosis of cancer
by PCT – LUNG
Excess Bed-days time trend - LUNG
Excess
– LUNG
Itembed-days by PCT Description
(normalised by incidence)
PCT 3
Average LoS by PCT – LUNG
%
PCT 1
PCT 1
PCT 2
PCT 2
PCT 3
PCT 3
All PCTs
1995
All PCTs
Source: HES, Date
Comments: …
PCT 1
England average
• Here the user could type action items that he/she considers important
• …
• …
• …
Average LoS
PCT 2
Excess Bed-days
PCT 1
% of 31 days meeting Standards Vs National
Target All cancers - PCT1
£ etc…
Source: HES, Date
Comments: …
2000
2006
All PCTs
Source: HES, Date
Comments: …
Source: HES, Date
Comments: …
PCT
England
National Target
of TWRs meeting standard (98%)
Jul
Source: CWT, CIS, Date
Comments: …
Aug
Sept
In trust and
transfer
breakdown
% of 62 days meeting Standards Vs National
Target All cancers - PCT1
% 62 days meeting National
Standards
£ etc…
% 31 days meeting National
Standards
Total Costs per PCT / Network
62 day
trend
PCT
England
In house treatment
Trust transfer
Aug
Lung
PCT 1
PCT 2
PCT 3
All PCTs
National Target
of TWRs meeting standard (995)
Jul
# not referred as TWR /100,000
Source: CWT, CIS, Date
Etc
…
England
Source: CWT, CIS, Date
All PCTs
Source: IC, NHS Date
Comments: …
PCT1
PCT
Excess beddays per
cancer type,
trust and PCT
England Average
Source: CWT, Date
2006
% Not
Referred as
TWR
Sept
All cancers
Target (99%)
All PCTs
TWR target
Number of patients Expected
Previous
Incidence per expected in PCT / total costs
year
100,000
network per
per drug
spend (£)
annum
(£)
Aug
% of TWR meeting Standards
% Successfully quit after 4 weeks
All PCTs
Source: HES, Date
Jul
England
Source: CWT, CIS, Date
Add to basket
ManageComments: …
scenarios
NICE
guidance
Mild
Dyskaryosis
Negative
PCt 1
View Dyskaryosis
Level
All PCTs
England
2000
B
Bed-days / PCT incidence
T1
Comments: …
Source: IC, NHS Date
A
1. …
2. …
3. …
4. …
T1
T3
% of TWR with cancer diagnosis
Drug Indication Manufacturer Status
# TWR with
cancer
diagnosis
Test Results
(self report)
1995
or
1
abc
PCT 3
PCT 2
% success
rate
% of all TWRs
Choose PCT
PCT 3
PCT 2
Etc.
Choose Network
Source:
HES,
Date
Choose
Scenario
%
Test results 2005 - 2006
Women aged 25 – 64
% Successfully quit at 4 weeks
Comments: …
Prostate
%
All SHAs
Actual
numbers
% bed-days above trim point
Breast
T3
PCT4
All PCTs
T1
% successfully quit
All Trusts
Comments: …
PCT 1
SHA 2
SHA 1
PCT 1
PCT 3
T1
%
Source: Screening Date
£
Trust 3
Source: HES, Date
PCT 2
T1
%
2005 - 2006
Costs by FCE
Source: HES, Date
100%
T3
PCT3
%
Coverage
2006
Drug budget
per indication
and network
and PCT
T1
%
All cancers
PCT 1
Women aged 50 – 64
2000
Costs of emergency admissions by Trust (not
normalised) - LUNG
Comments: …
T1
%
There is a wealth of information
2
Trust 1 Trust 2
2000
%
All PCTs
Cancer Source: HES Date
Detected
# of TWR with cancer diagnosis
%
%
# TWR with cancer Diagnosis
/100,000
Choose Trust
PCT 3
PCT 2
PCT 1
PCT1
%
Rate of cancer detected
Comments: …
All
Lung
Coverage
Source: HES Date
Source: HES, Date
PCT 1
England average
PCT 3
PCT 2
All cancers
All PCTs
All
1995
Activity trend per PCT - LUNG
FCE / incidence
PCT 1
PCT 1
England average
FCE / incidence
Trust 1 Trust 2 Trust 3
Source: HES, Date
All Trusts
% of cancer deaths in hospital
All cancers
Activity trend per PCT - LUNG
FCE
FCE
Trust 3
Activity per
admission
type and PCT
1995
2006
1
Choose procedure
Choose PCT
2000
1
All
Choose PCT
Choose procedure
Choose procedure
Which Hospital - All cancers
%
% of cancer deaths in the Hospice
Comments: …
Episodes by trust (not normalisied) - LUNG
Source: HES, Date
Female UK
Source: CIS, Date
3
All
All
Trust 1 Trust 2
Male UK
% of all TWRs
2
Female PCT 1
Rate per 1000 women
screened
1
All PCTs
Source: CWT, CIS, Date
All Localities
Male PCT 1
% meeting TWR standard
2001
PCT 3
PCT 2
PCT 1
% meeting TWR standard
All PCTs
Female UK
% of cancer hospital deaths by
Trust
PCT 3
Female PCT 1
Male UK
% of women screened
PCT 2
Choose admission type
Choose procedure
Source: C-Quiins Date
LCT 3
All cancers
Source: C-Quiins Date
5-year rolling average mortality All Cancers
Male PCT 1
Source: CIS, Date
Choose trust
All Localities
LCT2
LCT1
% of cancer deaths in hospital
PCT 3
PCT 2
2006
LUNG incidence past and projections
Age-standardized /100,000
Age-standardized /100,000
PCT 1
2000
At 2/3 of
meetings
LC 3
LC 2
Comments: …
PCT 1
PCT 1
1995
Source: CIS, Date
Source: CIS, Date
Prevalence LUNG Cancer
Female
Male
All Cancers
At ½ of
meetings
LC 1
LC 3
LC 2
LC 1
# not referred as TWR /100,000
PCT 2
Named Core
team
Members
% Compliance with # of core Members
Present at meetings
# not referred as TWR
All Cancers
# TWR with cancer Diagnosis
/100,000
PCT 3
PCT 2
PCT 1
PCT 1
Female UK
% compliance
H&N
Female PCT 1
Male UK
% of cancer deaths in the
Hospice
Skin
Male PCT 1
% successfully quit
Colon
Age-standardized /100,000
Survival
trends per
cancer type
and PCT
Breast Lung
Core
present at
meetings
5-year rolling average mortality LUNG
Age-standardized /100,000
Age-standardized
Age-standardized /100,000
PCT-1
Place of
death per PCT
of patient
and trust
% PCT Collective Measures Met
% compliance
Prevalence All Cancers
Female
Male
Actual incidence
# not referred as TWR /100,000
There are 100s of aspects that
must be taken into account when
making decisions about a Clinical
Service
Source: CWT, CIS, Date
Sept
Sept
Sept
What is COSD?
 The new national cancer dataset
 Incorporates previous cancer registration dataset
 Cancer Outcomes and Services
 Aligned with patient management
 Proposed and supported by clinicians
 Updated and aligned with other datasets
 Clarified definitions of data items, codes and values
 Specifies Provider submissions
 Compiled by registries from Providers and other
sources
UROLOGY
UPPER GI
SKIN
SARCOMA
LUNG
HEAD & NECK
HAEMATOLOGY
GYNAECOLOGY
CHILDREN,TEENAGERS,
YOUNG ADULTS
COLORECTAL
CENTRAL NERVOUS
SYSTEM
BREAST
COSD - Structure
Site
specific
Clinical
and Path
Cancer Outcomes and Services Dataset
CANCER WAITS
CORE - CANCER REGISTRATION
Demographics/Referral/Diagnostics/Diagnosis/Care Plan/Treatment
Patient
pathway
referral to
treatment
What’s different about
COSD? (1)
 Complete patient pathway
 Referral details for all cases
 All treatments
 Includes palliative and supportive care
 New core data items including
 TNM Edition Number
 Involvement of Clinical Nurse Specialist
 Duration of symptoms
 Mandatory for Children,Teenagers,Young Adults (CTYA), Optional for others
 Year/Month/Day as appropriate or available
 All registerable conditions including

in situ bladder, in situ melanoma, benign brain tumours
What’s different about
COSD? (2)
 Site specific data
 Key site specific clinical items – patient
management
 Site specific stage
 Stage components of RCPath datasets
 Includes recurrences
 Breast cancers to start with
 New record including referral information
COSD Dataset
Data Item Name
Primary Diagnosis (ICD)
Multidisciplinary Team Discussion
Date (Cancer)
Cancer Care Plan Intent
Performance Status (Adult)
TNM Stage Grouping (Final Pre
Treatment)
Site Code (Of Imaging)
Procedure Date (Cancer Imaging)
Imaging Code (Nicip)
Cancer Imaging Modality
Imaging Anatomical Site
Consultant Code
Care Professional Main Specialty
Code
Procedure Date
Primary Procedure (Opcs)
Procedure (Opcs)
Investigation Result Date
Service Report Identifier
Service Report Status
Care Professional Code (Pathology
Test Requested By)
Organisation Site Code (Pathology
Test Requested By)
Cancer Treatment Event Type
Treatment Start Date (Cancer)
Cancer Treatment Modality
Organisation Site Code (Provider
Treatment Start Date (Cancer)
Suggested System/Source
MDT
MDT
MDT
MDT
MDT
MDT
RIS
RIS
RIS
RIS
RIS
PAS/HES
Radiology
PAS/HES
PAS/HES
PAS/HES
PAS/HES
PATH
PATH
PATH
PATH
PATH
CWT
CWT
CWT
CWT
PAS
Pathology
National Feeds –
datasets and other
sources e.g. CWT,
RTDS, SACT,
(ONS)
What does this mean
for you? (Informatics 1)
 Multiple Trust systems (MDT, PAS, Path, RIS)
 Separate files for MDT, PAS, Path, RIS
 Compiled by registries
 Method of transmission
 Agreed with registries
 Secure transmission - nhs.net
 Aim towards XML
 Path data extracted from path reports by registries
 Complete Data Transfer Agreement
 Minimising duplication of data flows
What does this mean
for you? (Informatics 2)
 XML Action Plan
 to develop XML
 Support for in house developers
 Interim arrangements with Registry
What does this mean
for you?
 Monthly submission
 Current cancer registry feeds expanded to include COSD items
 25 working days after diagnosis or treatment
 Send updates as applicable
 Aim for three months to complete initial record (to first treatment)
 Final updates to first treatment within 6 months
 Further treatments - submit 25 working days after treatment
 How to collect in “real time” ?
 Clinical ownership/sign off for




MDT extract
PAS extract
Path extract
RIS extract
Key sources –
MDT System
 Resources
 Point of care recording
 Clinical sign off/Ownership
 Review and revise processes
 Inter Provider pathways
 Network wide implementation
 Data collection agreements
 Alignment with national audits
 Differences identified
 Move towards integrated submission
Key Sources –
Pathology System
 Existing extracts continue
 Path items may also be recorded in MDT system
 Can send from both systems
 Free Text Reports
 Data items extracted by registries
 Direction of travel
 Structured reporting
 Clinical oversight
 Summary feedback reports
Key sources – PAS
 Existing extract
 Use SUS/CDS/PbR return
 Check COSD data items included
 Discuss with regional registry
 Process for Clinical oversight
 Feedback reports
Key sources –
Radiology System
 How to identify cases






Can system identify cancer cases automatically
Can CWT be used to identify reports for cancer investigations
Identified by registries to request reports for specified cancer
Remote access to RIS for registries
IEP – future option?
Use of Diagnostic Imaging Dataset (DID)?
 Free Text reports
 Data items extracted by registries
 Clinical oversight
 Summary feedback reports
 Radiology items recorded in MDT system
 Can send from both systems
GAP Analysis – Conformance
Checklist
Support
Conformance
 Included in National Contract
 Information Standard
 Possible financial penalty
 Simple criteria
 Monthly feedback to Providers (raw data)
 e.g. data submitted on time?
 Staging data completeness
 Quarterly and annual feedback to follow (processed data)
 Potential Escalation process




Informal discussions
Notification to CEO
Formal notification to commissioners
NHS Commissioning Board
Implementation
Timetable
ISB Approval
June 12
July 12
ISN issued
Jan 13
CORE and
SITE
SPECIFIC
STAGE
July 13
SITE
SPECIFIC
CLINICAL
Jan 14
SITE
SPECIFIC
PATHOLOGY
Jan 15
FULL COSD
DATASET
submitted in XML
[email protected]
Future Direction for
Cancer Registries
What is happening at the cancer registries
and how it will support Trusts?
National Cancer Registration
Service

Single England wide system

Cancer Outcomes and Services Dataset compliant

Facilitates rapid processing of multiple local and all national data
sources

Common standards and processes including data quality

Provides rapid and direct feedback of data to clinical teams to enhance
data quality

Support for (near) real-time surveillance, cancer audit and analysis

Datasets available for external analysis and research
Local data collection at MDTs is key to success
Local Feeds
(COSD direct)
Data
sources - patient-level data
National
Feeds (inc COSD
indirect)
Radiotherapy
Data (RTDS)
Cancer
Waiting
Times
Data from MDT
software systems
Chemotherapy
Dataset (SACT)
Local imaging
systems
ONS - Cancer
and noncancer deaths
Cancer
screening
programmes Bowel, Cervix
and Breast
Patient
Administration
Systems
Local
clinical data
systems
Encore
National Pilots
National PETCT imaging
National cancer
audits - Lung,
Head and Neck,
Upper GI and
Colorectal
Pathology
full-text
reports
Hospital
Episode
Statistics
(HES)
Recurrent/Meta
static Breast
Audit Pilot
CRUK
Stratified
Medicine
(Sept 2011)
Information Governance
(1)
• S251 NHS Act exemption
• All cancer registries covered – one annual application
• Annual renewal through National Information Governance
Board (NIGB) and corresponding statutory instrument
• Caldicott Guardian
• sign-off required to allow transfer of data to and from
organisations
• existing signoff covers COSD
Information Governance
(2)
 Data Protection Act
 All cancer registries are registered under
the DPA.
 Fair processing notices, including rights to
withdraw consent, are provided through
the UKACR Patient Information Leaflet
(under revision)
 Latest version of leaflet available from:
http://www.ukacr.org/content/patient-information
Feedback for Providers
and Clinical Teams
 Monthly Conformance Report
 Extract files received, number of cases, timeliness etc
 Data Quality
 Initial completeness eg NHS number, stage, performance status,
diagnosis
 Summary Information Indicators
 Eg % histologically verified, RCPath data item completeness
 Clinical and Performance Indicators
 NICE Quality Standards etc
 Eg % lung resections
 % breast conserving surgery with no Radiotherapy
Proposed Feedback
Timetable
Summary
reports
~ Sept 13
First feedback
reports
~ Mar 13
First submission
- 7th Mar 13
Jan 13
CORE and SITE
SPECIFIC STAGE
July 12
ISN issued
July 13
SITE SPECIFIC
CLINICAL
Standard clinical
feedback reports
~ Mar 14
Jan 14
SITE
SPECIFIC
PATHOLOGY
Jan 15
FULL COSD
DATASET
submitted in XML
Future Feedback?
The Future
 A single cancer registration system (ENCORE) for England
 COSD compliant
 Routine, timely feedback
 Improved registry/clinical partnership working
 Provide powerful data for local, national and international
analysis