Download ROCR Application

Proposal for ROCR Approval
Type of Collection?
See Note
1. Is this: See Note
ROCR
Enter ROCR reference number:
2. Title of proposed
collection
A review of an existing collection with changes?
ROCR/OR/2142/FT6/001MAND
Cancer Outcomes and Services Dataset (COSD)
3. Contact Details: See Note
Personal Details
Trish Stokes
Department
Organisation
National Cancer Intelligence Network
Public Health England
Email
[email protected]
Tel Number
07769 282923
The Cancer Outcomes and Services Dataset
(COSD) is a secondary use clinical dataset
4. What is being collected, and what is
the purpose of the collection?
See Note
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).
These data are key to the production of the
National Statistics for cancer, through the Office
for National Statistics. In addition, these data are
required for understanding the provision of
4a. Why is the information necessary and services and the outcomes for patients with a
not just useful?
diagnosis or suspicion of cancer, especially with
regard to the appropriateness of treatment,
equality of care, and clinical outcomes. Many of
the commitments outlined in the Improving
Outcomes: A Strategy for Cancer (January 2011)
are dependent on high quality, accurate data
being captured and available in a timely manner
to be able to monitor progress and understand
services. The dataset is aligned and integrated
with other cancer datasets including the Systemic
Anti-Cancer Therapy Dataset (SACT), the
Radiotherapy Dataset (RTDS) and Cancer Waiting
Times (NCWTMDS). The collection of this dataset
is also integrated with changes in the cancer
registration service in England thereby enabling
the creation of a national repository of timely,
high quality, patient level data.
Since this collection was last approved, some
minor revisions to both core and site specific data
items in the dataset have been identified during
the course of implementation. These
amendments are required to align with changes
in clinical practice, to reflect recent organisational
restructure (e.g. the introduction of Clinical
Commissioning Groups), to provide further
clarification of meaning or to fix minor errors. In
addition, five new items are being introduced to
5. What has changed since this collection
enable a pilot feasibility project on the collection
was last approved, and what is the
of SNOMED CT codes, which is the NHS preferred
overall effect of the changes?
coding system, for specified surgical procedures
and pathology items. The overall effect of the
changes, which include minor amendments to
data item names, descriptions and formats, as
well as the additional of a few new data items,
will enable the COSD to continue to meet NHS
business requirements and support
implementation and monitoring of Improving
Outcomes: a Strategy for Cancer (IOSC).
6. What is the latest date for approval?
See Note
7. Which organisation will be collecting
this information?
8. List top three Keywords
31/12/2013
Cancer Registries
1st Keyword:
Cancer
2nd Keyword:
3rd Keyword:
9. What is the start date for this
proposed collection?
See Note
9a. Please state when you would like the
ROCR licence to run from.
10. What is the finish date for this
proposed collection? Please also include
the date if the collection is ongoing.
See Note
Outcomes
Registration
01/01/2013
01/01/2014
01/01/2020
This proposal 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 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
11. What Operating Framework
commitment does the proposal support?
See Note
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.”
12. Who supports this proposal? See
Note
Minister:
Group Director:
Paul Burstow MS(CS)
Professor Sir Bruce Keogh, NHS
Medical Director
Policy Lead/Section Head support from:
Jane Allberry, Deputy Director, DH
Senior Civil Servant, to whom correspondence about the collection can be addressed:
(give name, organisation, section, telephone and email address)
Name
Organisation
Di Riley
Public Health England
Section
Telephone
Email
National Cancer Intelligence Network
0207 654 8143
[email protected]
Has evidence of Gateway Support: (eg date, person, Gateway number if
applicable)
No
Proposal for ROCR Approval
ROCR Contact Details
13. Burden calculation?
See Note
Frequency
Monthly
See Note
Organisational Type
Acute Non Foundation Trust
Number of organisations
74
Occupational Group
See Note
Days Hours Minutes
Burden
Days
Burden
Years
Annual
Burden £
Senior Managers
0
0
0
0
0
0
Managers
0
0
0
0
0
0
Clerical & Administrative
0
14
0
1657.6
8.29
377336.06
Maintenance & Works
0
0
0
0
0
0
Healthcare Assistants and other support
0
staff
0
0
0
0
0
Healthcare scientists
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
Consultants
0
0
0
0
0
0
GPs
0
0
0
0
0
0
Hospital Doctors
0
0
0
0
0
0
CEO
0
0
0
0
0
0
Directors
0
0
0
0
0
0
Total
0
14
0
1657.6
8.29
377336.06
All Nurses, Midwives and health visiting
staff
Scientific, therapeutic & technical staff
(ST&T) (Inc. AHP's)
See Note
Organisational Type
Acute Foundation Trust
Number of organisations
91
Occupational Group
See Note
Days Hours Minutes
Burden
Days
Burden
Years
Annual
Burden £
Senior Managers
0
0
0
0
0
0
Managers
0
0
0
0
0
0
Clerical & Administrative
0
14
0
2038.4
10.19
464021.38
Maintenance & Works
0
0
0
0
0
0
Healthcare Assistants and other support
0
staff
0
0
0
0
0
Healthcare scientists
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
Consultants
0
0
0
0
0
0
GPs
0
0
0
0
0
0
Hospital Doctors
0
0
0
0
0
0
CEO
0
0
0
0
0
0
Directors
0
0
0
0
0
0
Total
0
14
0
2038.4
10.19
464021.38
All Nurses, Midwives and health visiting
staff
Scientific, therapeutic & technical staff
(ST&T) (Inc. AHP's)
Insert another Organisation type
Grand Total Grand Total
Days
Years
3696
Please state if this is an increase or decrease in
burden.
See Note
Are you planning on collecting from Independent
and Voluntary Sector Organisations?
18.48
Grand Total
Burden
841357.44
Please see section 4a for the justification of
this burden to the NHS.
Proposal for ROCR Approval
ROCR Contact Details
14. If sampling of organisations is not
being used please state why.
See Note
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.
15. Are the estimates above and the
design of the collection supported by
any pilots, consultation exercises, trials
or other tests of the proposal? If so,
please give details.
See Note
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. Since implementation in January 2013, the
changes referred to in Q5 have also undergone
consultation in which the majority of comments
received supported the changes. As these changes do
not require any significant change in practice it is not
expected that they will place any burden on NHS
Service Providers.
Following approval by the
Information Standards Board the revisions will be
tested with suppliers and Providers over the course of
the five months prior to their implementation in April
2014.
16. If your proposal results in an
increase to the ongoing burden (as
indicated in Q13 above), please
indicate what measures you propose to
reduce the burden elsewhere to result
in a net zero change or decrease.
See Note
Upon the implementation of the COSD in January
2013, it was inevitably that there would be an increase
in burden to some NHS Providers. Overtime this has
reduced as systems become more automated and
familiar, and have been integrated increasingly with
current clinical practices. In parallel, NCIN have
continued to work towards ensuring that information
can be captured once along the patient pathway, even
where it may currently be submitted to more than one
organisation. The strategic aim once the COSD is
established is that data will only need to be submitted
once and will then be linked with other datasets for
analytical purposes. Rapid feedback on data received
and on collated data from multiple sources will
subsequently reduce the burden on Providers to collate
this data individually.
17. What collection method do you
propose to use?
See Note
Web based collection
Email
Extract from existing NHS systems
Other electronic (e.g. spreadsheet or disk)
Unify2
Input to Database
Database extract
Telephone
Paper
Omnibus collection See Note
Other (give details)
17a. If other, please state:
18. For Non Foundation Trusts is the
collection statutory, mandatory, part
mandatory, voluntary or not required?
See Note
MANDATORY
18a. For Foundation Trusts is the
collection statutory, mandatory, part
mandatory, voluntary or not required?
See Note
MANDATORY
19. Which of the following equalities
dimensions are included in the
collection?
See Note
Age/Date of Birth
Gender
Ethnicity (NHS standard 16 + 1)
Sexual Orientation
Faith
Disability
20. Of those you propose to include in
Q19, please give details of the
definitions you intend to use for each?
Sexual orientation, faith and disability are not directly
covered but as this dataset is collected at person
identifiable level it could be linked to these dimensions
if collection commences in NHS.
21. Is this request accompanied by a
position statement from the NHS Data
Model & Dictionary Service and the
Information Standards Board for Health
and Social Care (ISB HaSC)? If
required, please contact Data
Standards - [email protected], or
ISB [email protected]
The COSD change request is currently under
consideration by the Information Standards Board with
a decision on the proposed amendments expected at
the end of this month (November 2013).
See Note
22. Is the information to be collected
intended for publication or other
release? If not, please give reasons
why.
Yes.
See Note
23. If the answer to Q22 was yes,
Releases of these data will be in line with the UK
please state your publication or release
Statistics Authority Code of Practice for Official
strategy.
Statistics, which covers the Office for National
See Note
Statistics along with the UKACR Information Release
Guidelines. Information will be published via a variety
of media, e.g. websites, data briefings, bulletins,
scientific reports etc. There will be different publication
timelines for different purposes. Feedback to service
providers and commissioners will be available within 36 months of data being submitted, whereas data and
information relating to outcomes and service quality
may only be published on an annual basis. All, reports
will be tailored for their specific audience, along with
specific commentary, etc.
24. Will the data collection generate
Yes, there is always media interest in any data and
any media interest, and if so, what
information relating to cancer and NHS cancer
measures do you have in place to deal
services. Data relating to incidence, mortality and
with it?
survival will be shared with the Office for National
Statistics, and will be subject to the ONS publication
process as they are the official statistics. The prerelease of and management of data by ONS is in line
with UKSA Code of Practice for Official Statistics and
the DH will brief ministers accordingly. The whole
process will be overseen by the National Cancer
Intelligence Network (NCIN) which is part of Public
Health England. NCIN has a Communications Manager
and Press Office.
25. Does the proposal have any impact
on Social Services?
See Note
25a. If the answer to Q25 was yes,
please give reason.
26. Do you intend to collect
information from NHS Foundation
Trusts?
See Note
Please attach documents that support
your ROCR application. Without a list of
No
Yes
Insert item
the questions to be asked we will not
be able to process your application
Proposal for ROCR Approval
ROCR Contact Det
27. If the answer to question
26 is yes, state why?
To enable comprehensive information to be captured on all patients wit
a diagnosis or suspicion of cancer and to support the production of
National and Official Statistics it is imperative that all Trusts including
NHS Foundation Trusts are requested to provide data.
28. Is the information or any
This is an extension and replacement of the previous Cancer Registratio
part of it already collected? If
Dataset ROCR/OR/0220/FT6MAND which is for secondary use of data
so please state why this should
collected as part of routine healthcare management. Foundation Trusts
be collected again.
were already providing data as part of this process.
29. Please explain why you
Monthly data collection is required to enable timely reporting and
propose the frequency of
monitoring of progress against the requirements in both and
collection as stated in Question
the Outcomes Frameworks for the NHS in England (2013/14) and
13.
Improving Outcomes: A Strategy for Cancer (January 2011).
30. If you are proposing to
It is imperative that detailed information is available for every patient
collect from all Foundation
with cancer managed by the NHS to enable outcomes analysis and
Trusts, please give reasons
why a sample cannot be used? 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.
31. Can the proposed
information be provided by
commissioners rather than
directly from Foundation
Trusts? If not, why not?
The information cannot be provided by commissioners, as these are
patient level data which are collected as part of routine healthcare
management and are not all readily available to commissioners.
32. Does all the data requested a. Vital for Patient Care
fall into one or more of these
b. Essential for the flow of funds to
categories?
NHSFTs
See Note
c. The requesting body has a statutory
duty to provide the information
d. Very High ministerial profile
See Note
e. Necessary for Care Quality Commission
assessment
f. Directly underpins delivery of a target
(State which).