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Proposal for ROCR Approval
1. Record
Type?
Review
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 use clinical dataset collected for all
patients with a diagnosis or suspicion (high risk) of
cancer managed by the NHS. The data will support the
surveillance of, and provision of services for cancer
within the NHS as specified in Improving Outcomes: A
Strategy for Cancer (January 2011).
7. State
Submitted to ROCR
8. ROCR
Reference No
ROCR/OR/2142/003MAND SCCI1521
9. Start Date
01/01/2013
10. End Date
01/01/2020
11. FT
Collection
Type
MANDATORY
12. Collection
Type
MANDATORY
Proposal for ROCR Approval
13. Owning
Organisation
Public Health England
14. Owning
Department
National Cancer Intelligence Network
15. Owner
Name and
Contact
Details
Name: Trish Stokes
16. Senior
Supporting
Official Name
Chris Carrigan
17. Senior
Supporting
Official
Contact
Details
Title: Deputy to the Chief Knowledge Officer
18. Data
Provider Burden Days
3696
18. Data
Provider Burden £
£ 841357.44
18. Frequency
Monthly
18. Source
Organisations
(Number of
orgs)
Acute Non Foundation Trust (74) , Acute Foundation
Trust (91)
19. Set Up
Costs
Email: [email protected]
Tel No: 020 7654 8158 / 07769 282923
Tel No: [email protected]
Location: Deputy to the Chief Knowledge Officer
Proposal for ROCR Approval
20. Other
Costs
£ 2935
21. Total
Costs
£ 844292.44
22. Please
explain the
reason for any
increase or
decrease in
burden and
provide
details of the
any other
costs figure
provided in
Q20
Please see section 4a for the justification of this
burden to the NHS.
23. Benefits to
Patients and
the NHS
"This collection will support the identification of
improvements to quality and equity of services for
cancer patients. The data is used to calculate national
epidemiological statistics for cancer and is essential to
enable forward strategic planning. Analysis of the data
including differences in treatment provided can be
used to compare services and outcomes and therefore
will help to drive up quality and improve outcomes for
cancer patients. As this is not a new dataset but a
revision to the pre-existing Cancer Registration
dataset, there has been a reduction in the number of
items in the original dataset which can be offset
against the introduction of the new data items
designed to support outcomes monitoring within the
COSD. The calculated burden for the additional items
is £484,204. We feel that the increase in burden is
justified to ensure that services meet the current
information requirements of the NHS for more
accurate management, commissioning and
performance management. Improving Outcomes: A
Strategy for Cancer emphasised the role that high
Proposal for ROCR Approval
quality data and information play as drivers of
improved cancer outcomes for all stakeholders and
this revised dataset is designed to help deliver what is
required. The Fundamental Review of Data Returns
published in August 2011 further states: “The NHS
and Department of Health are working to deliver the
Coalition Government's aim to deliver health outcomes
that are among the best in the world. For cancer, this
is not possible without an integrated approach to
information, including registration, the management of
screening systems and the monitoring of service
quality (audit) and levels of activity. The key findings
of this review support the continuation of the wide
range of data flows covering cancer and cancer
services; this will assist the NHS in providing better
outcomes.”"
24. Financial
benefits to
running this
collection
25.
Publication
methods
Yes.
26.
Publication
Links
27.
Requesting
Organisation
Cancer Registries
28. Collection
Method
Extract from existing NHS systems, Database extract
29. NHS
Mandate
"This proposal supports Domain 1 of the 2013/14 NHS
Outcomes Framework (paragraph 1.30 to 1.33)
Proposal for ROCR Approval
Commitment
regarding cancer survival “The Department of Health’s
Cancer Outcomes Strategy sets an aim of saving an
additional 5,000 lives per year by 2014/15 which is
predicated on survival rates improving for all cancers.”
Domain 1 of the Outcomes Framework, Preventing
people from dying prematurely, includes indicators for
both adults and children with cancer. Furthermore, the
Fundamental Review of Data Returns published in
August 2011 states: “The NHS and Department of
Health are working to deliver the Coalition
Government's aim to deliver health outcomes that are
among the best in the world. For cancer, this is not
possible without an integrated approach to
information, including registration, the management of
screening systems and the monitoring of service
quality (audit) and levels of activity. The key findings
of this review support the continuation of the wide
range of data flows covering cancer and cancer
services; this will assist the NHS in providing better
outcomes.”"
30. Changes
since last
assessment
The majority of changes are minor amendments in
order to ensure consistency with current clinical
practice and patient management and are therefore
cost neutral at worst. The eight new items should not
make a significant change to the overall burden: four
of them apply to all cases and would be expected to
be already in the electronic MDT systems included in
the original burden calculations. The other four relate
to recording of stage of disease for a small number of
upper gastrointestinal cases (less than 8,000 cases for
each item), and have been requested to align with
recommended clinical practice for the relevant disease
types.
31. Data in
operational
systems
Yes
32. Plans for
Proposal for ROCR Approval
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, which are produced through the Office for
National Statistics, would be unable to be produced. In
addition, the NHS would have far less understanding
of the provision of services and the outcomes of
patients with a diagnosis or suspicion of cancer,
especially with regard to the appropriateness of
treatment, equality of care, and clinical outcomes.
34. Is there an
impact
assessment or
business case
for this
collection? If
so please
attach
35. Process
required for
others to go
through to
obtain the
data
"It is envisaged that the data will be widely available
for others to use through a Cancer Analysis Tool (CAS)
which is currently in development. The CAS will be a
'world-leading analytic environment for cancer data
and intelligence'. Development of the CAS is being led
by a CAS Steering Group that includes the NCIN,
National Cancer Registration Service, clinical,
analytical and user representation. In the meantime,
while this is being developed, a data sharing protocol
is being produced by the National Cancer Registration
Service."
36. Keywords
Cancer, Outcomes, Registration
37. National /
Official
statistic
Proposal for ROCR Approval
38. Method
used to store
the data
39. Why
sampling is
not used
It is imperative that detailed information is available
for every patient with cancer managed by the NHS to
enable outcomes analysis and national statistics to be
produced on a complete population basis. In addition
the information is used by to support genetic and
follow-up enquiries made by clinicians and therefore
sampling would not be an appropriate method.
40. Details of
any pilots
The COSD, prior to it receiving approval as an
Information Standard (ISB 1521), underwent formal
definitional and operational (pilot) testing processes as
well as an open consultation during February/March
2011. The findings from these were reported and the
results led to the current structure of the dataset. The
changes referred to in Q5 are currently undergoing
consultation, the results from which are expected in
August. Following approval, the revisions will be tested
with suppliers and Providers over the course of the
five months prior to their implementation in April
2015.
41. Equalities
dimensions
used in the
collection
Age/Date of Birth, Gender, Ethnicity (NHS standard 16
+ 1)
42. Policy that
the collection
supports
"The collection of the COSD only begun in January
2013 and is a phased approached with collection and
submission of the full dataset in XML format expected
to be completed by January 2015. Consequently, no
national decision as such has been made or national
policy developed on the basis of the information that
has been collected so far. However, the dataset
supports Domain 1 of the 2013/14 NHS Outcomes
Framework (paragraph 1.30 to 1.33) regarding cancer
survival “The Department of Health’s Cancer
Proposal for ROCR Approval
Outcomes Strategy sets an aim of saving an additional
5,000 lives per year by 2014/15 which is predicated
on survival rates improving for all cancers.” Domain 1
of the Outcomes Framework, Preventing people from
dying prematurely, includes indicators for both adults
and children with cancer. Furthermore, the
Fundamental Review of Data Returns published in
August 2011 states: “The NHS and Department of
Health are working to deliver the Coalition
Government's aim to deliver health outcomes that are
among the best in the world. For cancer, this is not
possible without an integrated approach to
information, including registration, the management of
screening systems and the monitoring of service
quality (audit) and levels of activity. The key findings
of this review support the continuation of the wide
range of data flows covering cancer and cancer
services; this will assist the NHS in providing better
outcomes.” In addition to this, the COSD goes much
further than the previous National Cancer Dataset by
incorporating a revised generic Cancer Registration
Dataset (CRDS) and additional clinical and pathology
site specific data items relevant to different tumour
types, more detailed information on every patient with
cancer managed by the NHS will be available to enable
outcomes analysis and national statistics to be
produced on a complete population basis which will be
used to define national decisions and national policy
for years to comes."
43. IG Data
type
Patient identifiable, Record level