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Cancer Outcomes and Services Dataset What is COSD? Implications for Providers and Networks

Cancer Outcomes and Services Dataset What is COSD? Implications for Providers and Networks. Why are we doing this – the impact of information?. NCPR 2010/11. 31 Days - CWT. Why are we doing this - newer Information?. Routes to Diagnosis.

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Cancer Outcomes and Services Dataset What is COSD? Implications for Providers and Networks

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  1. Cancer Outcomes and Services DatasetWhat is COSD?Implications for Providers and Networks

  2. Why are we doing this – the impact of information? NCPR 2010/11 31 Days - CWT

  3. Why are we doing this - newer Information? Routes to Diagnosis

  4. There are 100’s of aspects that must be taken into account when making decisions about a Clinical Service Place of death per PCT of patient and trust Survival trends per cancer type and PCT # TWR with cancer diagnosis There is a wealth of information Activity per admission type and PCT Excess bed-days per cancer type, trust and PCT Drug budget per indication and network and PCT

  5. 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

  6. What is COSD? • The new national cancer dataset • Cancer Outcomes and Services • Aligned with patient management • Proposed and supported by clinicians • Incorporates previous cancer registration dataset • 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

  7. COSD - Structure Cancer Outcomes and Services Dataset BREAST CENTRAL NERVOUS SYSTEM COLORECTAL CHILDREN,TEENAGERS, YOUNG ADULTS GYNAECOLOGY HAEMATOLOGY HEAD & NECK LUNG SARCOMA SKIN UPPER GI UROLOGY Site specific Clinical and Path CORE - CANCER REGISTRATION Demographics/Referral/Diagnostics/Diagnosis/Care Plan/Treatment CANCER WAITS Patient pathway referral to treatment

  8. What’s different about COSD? (1) • Complete patient pathway • Referral details for all cases • All treatments • Includes palliative and supportive care • Additional core data items including • Involvement of Clinical Nurse Specialist • Duration of symptoms • Mandatory for CTYA, Optional for others • Year/Month/Day as appropriate or available • All registerable conditions including • in situ bladder, in situ melanoma, benign brain tumours

  9. 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

  10. COSD Dataset MDT Radiology • Compilation into a single dataset (assembled by Registries – not by Providers) PAS Pathology National Feeds – datasets and other sources e.g. CWT, RTDS, SACT, (ONS)

  11. 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 • Minimising duplication of data flows

  12. What does this mean for you? (Informatics 2) • XML Action Plan • to develop XML • Support for in house developers • Registry conversion to XML

  13. What does this mean for you? • How to collect in “real time” ? • Clinical ownership/sign off for • MDT extract • PAS extract • Path extract • RIS extract • 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

  14. 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

  15. 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 • Clinical oversight • Summary feedback reports • Direction of travel • Structured reporting

  16. 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

  17. 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

  18. Conformance • 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) • Included in National Contract • Possible financial penalty • Potential Escalation process • Informal discussions • Notification to CEO • Formal notification to commissioners • NHS Commissioning Board

  19. Support

  20. Implementation Timetable ISB Approval June 12

  21. cosd@ncin.org.uk Thank you

  22. Future Direction for Cancer Registries Alex Albus Data Flows Project ManagerTrent Cancer Registry INFORMATICS

  23. National Cancer Registration Service • Single England wide system • New Cancer Outcome 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

  24. Data sources - patient-level data Local Feeds National Feeds Cancer Waiting Times Pathology full-text reports Data from MDT software systems Radiotherapy Data (RTDS) Chemotherapy Dataset (SACT) Local imaging systems ONS - Cancer and non-cancer deaths Patient Administration Systems Cancer screening programmes - Bowel, Cervix and Breast Local clinical data systems Encore National Pilots National PET-CT imaging CRUK Stratified Medicine (Sept 2011) Recurrent/Metastatic Breast Audit Pilot National cancer audits - Lung, Head and Neck, Upper GI and Colorectal Hospital Episode Statistics (HES)

  25. Direct Provider data flows

  26. 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

  27. 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 • Leaflet available from: www.orderline.dh.gov.uk/ecom_dh/public/home.jsf ACR078 About Cancer Registration

  28. 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 • 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

  29. Proposed Feedback Timetable Standard clinical feedback reports ~ Mar 14 First data quality reports ~ Oct 13 First feedback reports ~ April 13 First submission ~ March 13

  30. Future Feedback?

  31. The Future • A single cancer registration system (ENCORE) for England • COSD compliant • Routine, timely feedback • Improved registry/Network partnership working • Provide powerful data for local, national and international analysis

  32. Examples of Current Feedback in North Trent

  33. North Trent Readiness and Conformance

  34. Conformance (1)

  35. Conformance (2)

  36. Conformance (3)

  37. Thank you! Any questions? Alex Albusalex.albus@nhs.net sht-tr.TCRNNBatch@nhs.net(secure – data transmission)

  38. Cancer Outcomes and Services DatasetHow ready is our Cancer Network?North Trent Cancer NetworkDr David HughesConsultant HistopathologistAssociate Medical Director for Cancer ServicesSheffield Teaching Hospitals NHS Foundation Trust

  39. Summary • “State of Readiness Questionnaire” results • Identify areas for discussion • Meeting the COSD specification in North Trent • Local processes for collecting/extracting data • Difficult data items to collect • Schema and mandatory items • Clinical engagement

  40. State of Readiness Questionnaire Results (1) • Five full responses received! • Some notable results: • 4 of 5 Trusts have completed a COSD ‘gap analysis’ • Live data collection is inconsistent • Confidence levels to meet January’s requirements are low in places

  41. State of Readiness Questionnaire Results (2) Live MDT data collection? YES NO

  42. State of Readiness Questionnaire Results (3) Live MDT data collection by Trust

  43. State of Readiness Questionnaire Results (4) Confidence to submit: Core and site-specific stage Very confident

  44. State of Readiness Questionnaire Results (5) Confidence to submit: Core and site-specific stage Not at all confident Very confident

  45. State of Readiness Questionnaire Results (5) Confidence to submit: site-specific clinical (July 13) Not at all confident Very confident

  46. State of Readiness Questionnaire Results (5) Confidence to submit: site-specific clinical (July 13) Not at all confident Very confident

  47. State of Readiness Questionnaire Results (5) Confidence to submit: site-specific pathology (2014) Not at all confident Very confident

  48. Meeting the COSD specification in NTCN Local processes for collecting/extracting data • Systems in use at each Trust • Who collects? • Variation in live data collection • Network-level (central) MDTs • Inter-provider transfers • Extraction and submission

  49. Systems in use • InfoFlex (CIMS) • A COSD XML reporting module (Sept 12) • Any data within InfoFlex can be mapped to it • A complete COSD data collection module (Sept 12) • Alternative databases • Adaptations required to carry COSD items in discrete format, adhering to specification

  50. Alternative sources • Use of other datasets • LUCADA (lung) and NBOCAP (colorectal) final pre-treatment TNM typically at 100% completion • Link to InfoFlex COSD XML extract via mappings • Transfer freetext to structured data items • E.g. “discsussion” or “outcome” boxes which contain valuable stage data hidden within text

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