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Proposal for ROCR Approval
1. Record
Type?
Reassessment
2. Unique
Number
R00336
3. Title
Cancer Outcomes and Services Dataset (COSD)
4. Collection
Type
National
5. Other
Reference
6. Description
The Cancer Outcomes and Services Dataset (COSD) is a secondary u
a diagnosis or suspicion (high risk) of cancer managed by the NHS.
provision of services for cancer within the NHS as specified in Impro
2011). The current dataset revision v7.0 also contains data that mee
World-Class Cancer Outcomes. A Strategy for England 2015-2020' T
will also separate Pathology as its own sub-set of COSD with a separ
these data to the pathology teams, this will save the Cancer Service
collection. 89 data items have been retired across the dataset in this
to continue to keep the dataset clinically relevant. There have been
to make data collection and reporting more logical and should in tur
7. State
Ready for Panels
8. ROCR
Reference No
ROCR/OR/2142/003MAND SCCI1521
9. Start Date
01/04/2017
10. End Date
01/04/2020
11. FT
Collection
Type
MANDATORY
Proposal for ROCR Approval
12. Collection
Type
MANDATORY
13. Owning
Organisation
Public Health England
14. Owning
Department
National Cancer Registration and Analysis Service
15. Owner
Name and
Contact
Details
Name: Andrew Murphy
Email: [email protected]
Tel No: 01223 724419 / 07876 758141
Location: Cambridge/London
16. Senior
Supporting
Official Name
Professor John Newton
17. Senior
Supporting
Official
Contact
Details
Title: Chief Knowledge Officer, PHE
Tel No: 0207 654 8066
Email: [email protected]
Location: London
18. Data
Provider Burden Days
100083.2
18. Data
Provider Burden £
£ 27848216.19
18.
Frequency
Monthly
Proposal for ROCR Approval
18. Source
Organisations
(Number of
orgs)
Acute Non Foundation Trust (56) , Acute Foundation Trust (104)
19. Set Up
Costs
20. Other
Costs
£ 25666.0
21. Total
Costs
£ 27873882.19
22. Please
explain the
reason for
any increase
or decrease
in burden and
provide
details of the
any other
costs figure
provided in
Q20
There are no extra costs expected in order to meet these system ch
allocation in v6.0 to enable Trusts to meet the changes in providing
around re-structuring the dataset and updating values (and data ite
more in-depth analysis has been carried out across multiple Trusts i
collection in a time spent/cost ratio. This will be significantly higher
allocation of time spent to collect just COSD, Trusts indicated how m
data. Using v7.0 dataset, I then removed both the pathology elemen
datasets (CWT, National Audits, SACT, RTDS, ONS) etc., to establish
collecting just COSD data at 55% of the cancer team’s workload. Alt
spent collecting just COSD (due to other national site specific audits
has been used to calculate these figures. This is because I would be
accommodate these dataset collections.
23. Benefits
to Patients
and the NHS
This collection supports the identification of improvements to quality
data is used to calculate national epidemiological statistics for cance
planning. Analysis of the data including differences in treatment pro
outcomes and therefore will help to drive up quality and improve ou
the previous Cancer Registration dataset. There has been a reductio
dataset which can be offset against the introduction of the new site
outcomes monitoring within the COSD. The calculated burden has in
Trust level for collecting cancer data, and in particular the COSD ele
burden is £27,848,216 Pathology has also been removed from this a
Trusts (outside of COSD). In the last version change, this formalised
xml and structured reporting. Once Trusts test and submit data in xm
report pathology, so there is no additional burden for this data collec
MDT Coordinators to independently transcribe/collect the same data
Proposal for ROCR Approval
burden of data collection by 30% The COSD continues to meet the c
more accurate management, commissioning and performance mana
Outcomes. A Strategy for England 2015-2020' Taskforce report, con
the importance of its use to improve cancer care and patient experie
recommendations and provides the NCRAS analysts with a vital sour
24. Financial
benefits to
running this
collection
n/a
25.
Publication
methods
The standard is publicised on the SCCI website and NCIN website. N
Cancer Registration and Analysis Service (NCRAS), which is part of P
will be re-branded shortly to reflect these changes but will continue
on the COSD webpages. The COSD Advisory Board will also use a CO
for the new version publication and headline advance notice of chan
newsletter will be used to publicise workshops and user groups mee
26.
Publication
Links
The NCIN website will be re-branded shortly to reflect these changes
information and updates on the COSD webpages. Once the data tran
via both the COSD Newsletter and via the NCRAS Liaison Managers
27.
Requesting
Organisation
National Cancer Registration and Analysis Service
28. Collection
Method
Extract from existing NHS systems, Database extract
29. NHS
Mandate
Commitment
This proposal supports the recommendations within the 'Achieving W
England 2015-2020' Taskforce report. In addition COSD continues to
groups via the NCRAS Site Specific Clinical Reference Groups and in
with cancer. The proposal continues to supports Domain 1 of the 20
1.30 to 1.33) regarding cancer survival “The Department of Health’s
saving an additional 5,000 lives per year by 2014/15 which is predic
cancers.” Domain 1 of the Outcomes Framework, Preventing people
Fundamental Review of Data Returns published in August 2011 state
working to deliver the Coalition Government's aim to deliver health
For cancer, this is not possible without an integrated approach to inf
Proposal for ROCR Approval
management of screening systems and the monitoring of service qu
findings of this review support the continuation of the wide range of
this will assist the NHS in providing better outcomes.
30. Changes
since last
assessment
This is a change to the standard which introduces some amendment
more logical groups and a revision of the current schema specificatio
objectives of the standard. Following specific recommendations with
A Strategy for England 2015-20 (Cancer Taskforce Report), new dat
collection of data In addition there are new data to help record and a
return to theatre • The surgeon (or surgeons), who were responsible
biomarker testing • The re-alignment of data across the dataset into
subsets of data o Pathology - This was part of the last standard and
these data in COSD XML o Patient Pathway – This is the data exclud
Teams need to collect. By removing the pathology data from their w
by 32% across the whole dataset. Wherever possible duplication acr
explanations of how to collect these data within the new structure p
Finally, where there were data that are no longer part of a linked na
Pathologists), these have also been removed from the dataset.
31. Data in
operational
systems
Yes
32. Plans for
collecting this
data from
operational
systems
33. If the
data was not
collected,
what would
the
consequences
be
If this data was not collected, the National Statistics for cancer, whic
Statistics, would be unable to be produced. In addition, the NHS wo
of services and the outcomes of patients with a diagnosis or suspicio
appropriateness of treatment, equality of care, and clinical outcomes
34. Is there
an impact
assessment
No
Proposal for ROCR Approval
or business
case for this
collection? If
so please
attach
35. Process
required for
others to go
through to
obtain the
data
Data is now widely available for others to use through a Cancer Ana
analysts and some researchers in England. The CAS is a 'world-lead
intelligence'. Development of the CAS was led by a CAS Steering Gr
Registration Service, clinical, analytical and user representation. In a
Cancer Stats website, which allows for analysis on COSD Conforman
(NPCA), National ling Cancer Audit (NPCA), Radiotherapy Dataset (R
the Future COSD Pathology and CHI data will also be available via th
36. Keywords
Cancer, Outcomes, Registration
37. National /
Official
statistic
NA
38. Method
used to store
the data
n/a
39. Why
sampling is
not used
It is imperative that detailed information is available for every patien
outcomes analysis and national statistics to be produced on a compl
is used to support genetic and follow-up enquiries made by clinician
appropriate method.
40. Details of
any pilots
The COSD, prior to it receiving approval as an Information Standard
operational (pilot) testing processes as well as an open consultation
these were reported and the results led to the current structure of th
dataset underwent a 4 week consultation process with key stakehold
board and National Analysts. The outcome of this consultation helpe
continue to be the world’s leading single cancer data collection tool.
41. Equalities
dimensions
used in the
Age/Date of Birth, Gender, Ethnicity (NHS standard 16 + 1)
Proposal for ROCR Approval
collection
42. Policy
that the
collection
supports
The collection of the COSD began in January 2013 and the data colle
and major data analyses. The following are important analysis or po
their data: 1 There are NICE Guidelines that have used NICE Guidan
Management) & NICE Guidance NG14 Melanoma. Some of these cov
but they are all now benefitting from the structure and robustness th
Campaigns Of particular significance are the Be Clear on Cancer eva
including the cancer outcomes metrics requested by the SofS:
http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic
are both clearly shaping policy. 3 Independent Cancer Taskforce The
world-class cancer outcomes: a strategy for England 2015-2020 rep
us/cancer-taskforce ) published in July 2015 includes: 8. PHE, Public
New cases of cancer diagnosed at stage 1 and 2 as a proportion of a
proportion where stage was known, 2013. . 2015. 51. Elliss-Brookes
determining the patient journey using multiple routine data sets. Br
McPhail, S., et al., Stage at diagnosis and early mortality from cance
S108-S115. 73. Moller, H., et al., Association between use of the En
cancer and mortality outcome in cancer patients: cohort study. Proc
Network (NCIN) Conference, 2015, 2015. 100. NCIN, Older people a
Intelligence Network. 4 Macmillan Cancer Support Macmillan publish
care beyond treatment in December 2015
(http://www.macmillan.org.uk/Documents/Campaigns/Cancercashcr
quoted the following pieces of work. xviii Macmillan Cancer Support
developed by Macmillan Cancer Support in partnership with Public H
Network (NCIN) and Monitor Deloitte. Diagnosis and initial treatmen
reason 13 weeks pre-diagnoses to six months post diagnosis. Care a
all inpatient hospital care for any reason between six months post d
afterwards. Costs include all inpatient hospital provided during this p
chemotherapy or biological therapy would go on for longer than six
treatments. xx Macmillan Cancer Support/Laudicella et al. (City Univ
London and the National Cancer Intelligence Network (NCIN) at Pub
Unpublished data – paper in preparation. Other results Laudicella M,
economic burden of cancer in England: evidence from patient-level d
Special Issue: National Cancer Intelligence Network Cancer Outcome
Hotel, Belfast. Volume 24, Issue Supplement S1, pages 1–23, June
January 2015 the NAO report on Progress in improving cancer servic
following 23 National Cancer Intelligence Network, Cancer by Depriv
Mortality, 1997–2011, May 2014. 24 For example, L Elliss Brookes e
determining the patient journey using multiple routine datasets’, Bri
2012, pp. 1220–26. 6 Commons Select Committee Public Accounts -
Proposal for ROCR Approval
cancer services and outcomes in England published on 12 March 201
(http://www.publications.parliament.uk/pa/cm201415/cmselect/cm
other things. 7 Improving outcomes Improving Outcomes: A Strateg
in December 2014
(https://www.gov.uk/government/uploads/system/uploads/attachm
mentioned 16 http://www.ncin.org.uk/publications/data_briefings/ A
October 2013 to October 2014
43. IG Data
type
Patient identifiable, Record level