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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