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Cancer Outcomes and Services Dataset What is COSD? Implications for Providers and Networks 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 Why are we doing this – the impact of information? 31 Days - CWT Why are we doing this – newer Information? Routes to Diagnosis PCT 3 Source: CIS, Date All PCTs 2006 2016 Here commentary about assumptions made in projections 1995 Episodes by PCT (not normalisied) - LUNG Elective Non-elective Choose PCT Trust 4 Comments: … Comments: … 1 1 2006 3 £ / FCE PCT 1 PCT 2 PCT 3 All PCTs Source: HES, Date % costs due to excess bed-days 100% Planned expenditure of current drugs PCT 1 All PCTs Comments: … T1 SHA 3 T3 Source: CWT, CIS, Date PCT 2 pCT 3 Data LCT2 LCT 3 LCT1 User notes Add to basket # not referred as TWR - All cancers PCT1 PCT Rate of % success quitters by quitters at 4 100,000 pop weeks Zoom up Cost per patient per annum (£) PCT 1 PCT 3 PCT 2 Data User notes # TWR with cancer diagnosis - All cancers PCT3 PCT1 PCT2 62 day trend % TWR with Cancer Diagnosis In trust and transfer breakdown Trend % of TWR with cancer diagnosis PCT1 100% All cancers - PCT1 PCT PCT 1 PCT 2 PCT 3 In Trust treatment England Trust transfer July Aug % of TWR meeting Standards - All cancers PCT1 % All cancers (2006) Jul Comments: … 62 day cases breakdown – all cancers Notes Aug PCT Jul England Aug Sept Source: HES Date Jul C Aug Sept Source: CWT, CIS, Date All PCTs Comments: … # not referred as TWR Assumptions: England population = 55 million, Network population = 1m, PCT population = 100,000 % admissions without a diagnosis of cancer by PCT – LUNG Excess Bed-days time trend - LUNG Excess – LUNG Itembed-days by PCT Description (normalised by incidence) PCT 3 Average LoS by PCT – LUNG % PCT 1 PCT 1 PCT 2 PCT 2 PCT 3 PCT 3 All PCTs 1995 All PCTs Source: HES, Date Comments: … PCT 1 England average • Here the user could type action items that he/she considers important • … • … • … Average LoS PCT 2 Excess Bed-days PCT 1 % of 31 days meeting Standards Vs National Target All cancers - PCT1 £ etc… Source: HES, Date Comments: … 2000 2006 All PCTs Source: HES, Date Comments: … Source: HES, Date Comments: … PCT England National Target of TWRs meeting standard (98%) Jul Source: CWT, CIS, Date Comments: … Aug Sept In trust and transfer breakdown % of 62 days meeting Standards Vs National Target All cancers - PCT1 % 62 days meeting National Standards £ etc… % 31 days meeting National Standards Total Costs per PCT / Network 62 day trend PCT England In house treatment Trust transfer Aug Lung PCT 1 PCT 2 PCT 3 All PCTs National Target of TWRs meeting standard (995) Jul # not referred as TWR /100,000 Source: CWT, CIS, Date Etc … England Source: CWT, CIS, Date All PCTs Source: IC, NHS Date Comments: … PCT1 PCT Excess beddays per cancer type, trust and PCT England Average Source: CWT, Date 2006 % Not Referred as TWR Sept All cancers Target (99%) All PCTs TWR target Number of patients Expected Previous Incidence per expected in PCT / total costs year 100,000 network per per drug spend (£) annum (£) Aug % of TWR meeting Standards % Successfully quit after 4 weeks All PCTs Source: HES, Date Jul England Source: CWT, CIS, Date Add to basket ManageComments: … scenarios NICE guidance Mild Dyskaryosis Negative PCt 1 View Dyskaryosis Level All PCTs England 2000 B Bed-days / PCT incidence T1 Comments: … Source: IC, NHS Date A 1. … 2. … 3. … 4. … T1 T3 % of TWR with cancer diagnosis Drug Indication Manufacturer Status # TWR with cancer diagnosis Test Results (self report) 1995 or 1 abc PCT 3 PCT 2 % success rate % of all TWRs Choose PCT PCT 3 PCT 2 Etc. Choose Network Source: HES, Date Choose Scenario % Test results 2005 - 2006 Women aged 25 – 64 % Successfully quit at 4 weeks Comments: … Prostate % All SHAs Actual numbers % bed-days above trim point Breast T3 PCT4 All PCTs T1 % successfully quit All Trusts Comments: … PCT 1 SHA 2 SHA 1 PCT 1 PCT 3 T1 % Source: Screening Date £ Trust 3 Source: HES, Date PCT 2 T1 % 2005 - 2006 Costs by FCE Source: HES, Date 100% T3 PCT3 % Coverage 2006 Drug budget per indication and network and PCT T1 % All cancers PCT 1 Women aged 50 – 64 2000 Costs of emergency admissions by Trust (not normalised) - LUNG Comments: … T1 % There is a wealth of information 2 Trust 1 Trust 2 2000 % All PCTs Cancer Source: HES Date Detected # of TWR with cancer diagnosis % % # TWR with cancer Diagnosis /100,000 Choose Trust PCT 3 PCT 2 PCT 1 PCT1 % Rate of cancer detected Comments: … All Lung Coverage Source: HES Date Source: HES, Date PCT 1 England average PCT 3 PCT 2 All cancers All PCTs All 1995 Activity trend per PCT - LUNG FCE / incidence PCT 1 PCT 1 England average FCE / incidence Trust 1 Trust 2 Trust 3 Source: HES, Date All Trusts % of cancer deaths in hospital All cancers Activity trend per PCT - LUNG FCE FCE Trust 3 Activity per admission type and PCT 1995 2006 1 Choose procedure Choose PCT 2000 1 All Choose PCT Choose procedure Choose procedure Which Hospital - All cancers % % of cancer deaths in the Hospice Comments: … Episodes by trust (not normalisied) - LUNG Source: HES, Date Female UK Source: CIS, Date 3 All All Trust 1 Trust 2 Male UK % of all TWRs 2 Female PCT 1 Rate per 1000 women screened 1 All PCTs Source: CWT, CIS, Date All Localities Male PCT 1 % meeting TWR standard 2001 PCT 3 PCT 2 PCT 1 % meeting TWR standard All PCTs Female UK % of cancer hospital deaths by Trust PCT 3 Female PCT 1 Male UK % of women screened PCT 2 Choose admission type Choose procedure Source: C-Quiins Date LCT 3 All cancers Source: C-Quiins Date 5-year rolling average mortality All Cancers Male PCT 1 Source: CIS, Date Choose trust All Localities LCT2 LCT1 % of cancer deaths in hospital PCT 3 PCT 2 2006 LUNG incidence past and projections Age-standardized /100,000 Age-standardized /100,000 PCT 1 2000 At 2/3 of meetings LC 3 LC 2 Comments: … PCT 1 PCT 1 1995 Source: CIS, Date Source: CIS, Date Prevalence LUNG Cancer Female Male All Cancers At ½ of meetings LC 1 LC 3 LC 2 LC 1 # not referred as TWR /100,000 PCT 2 Named Core team Members % Compliance with # of core Members Present at meetings # not referred as TWR All Cancers # TWR with cancer Diagnosis /100,000 PCT 3 PCT 2 PCT 1 PCT 1 Female UK % compliance H&N Female PCT 1 Male UK % of cancer deaths in the Hospice Skin Male PCT 1 % successfully quit Colon Age-standardized /100,000 Survival trends per cancer type and PCT Breast Lung Core present at meetings 5-year rolling average mortality LUNG Age-standardized /100,000 Age-standardized Age-standardized /100,000 PCT-1 Place of death per PCT of patient and trust % PCT Collective Measures Met % compliance Prevalence All Cancers Female Male Actual incidence # not referred as TWR /100,000 There are 100s of aspects that must be taken into account when making decisions about a Clinical Service Source: CWT, CIS, Date Sept Sept Sept What is COSD? The new national cancer dataset Incorporates previous cancer registration dataset Cancer Outcomes and Services Aligned with patient management Proposed and supported by clinicians 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 UROLOGY UPPER GI SKIN SARCOMA LUNG HEAD & NECK HAEMATOLOGY GYNAECOLOGY CHILDREN,TEENAGERS, YOUNG ADULTS COLORECTAL CENTRAL NERVOUS SYSTEM BREAST COSD - Structure Site specific Clinical and Path Cancer Outcomes and Services Dataset CANCER WAITS CORE - CANCER REGISTRATION Demographics/Referral/Diagnostics/Diagnosis/Care Plan/Treatment Patient pathway referral to treatment What’s different about COSD? (1) Complete patient pathway Referral details for all cases All treatments Includes palliative and supportive care New core data items including TNM Edition Number Involvement of Clinical Nurse Specialist Duration of symptoms Mandatory for Children,Teenagers,Young Adults (CTYA), Optional for others Year/Month/Day as appropriate or available All registerable conditions including in situ bladder, in situ melanoma, benign brain tumours 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 New record including referral information COSD Dataset Data Item Name Primary Diagnosis (ICD) Multidisciplinary Team Discussion Date (Cancer) Cancer Care Plan Intent Performance Status (Adult) TNM Stage Grouping (Final Pre Treatment) Site Code (Of Imaging) Procedure Date (Cancer Imaging) Imaging Code (Nicip) Cancer Imaging Modality Imaging Anatomical Site Consultant Code Care Professional Main Specialty Code Procedure Date Primary Procedure (Opcs) Procedure (Opcs) Investigation Result Date Service Report Identifier Service Report Status Care Professional Code (Pathology Test Requested By) Organisation Site Code (Pathology Test Requested By) Cancer Treatment Event Type Treatment Start Date (Cancer) Cancer Treatment Modality Organisation Site Code (Provider Treatment Start Date (Cancer) Suggested System/Source MDT MDT MDT MDT MDT MDT RIS RIS RIS RIS RIS PAS/HES Radiology PAS/HES PAS/HES PAS/HES PAS/HES PATH PATH PATH PATH PATH CWT CWT CWT CWT PAS Pathology National Feeds – datasets and other sources e.g. CWT, RTDS, SACT, (ONS) 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 Complete Data Transfer Agreement Minimising duplication of data flows What does this mean for you? (Informatics 2) XML Action Plan to develop XML Support for in house developers Interim arrangements with Registry What does this mean for you? 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 How to collect in “real time” ? Clinical ownership/sign off for MDT extract PAS extract Path extract RIS extract 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 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 Direction of travel Structured reporting Clinical oversight Summary feedback reports 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 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 GAP Analysis – Conformance Checklist Support Conformance Included in National Contract Information Standard Possible financial penalty 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) Potential Escalation process Informal discussions Notification to CEO Formal notification to commissioners NHS Commissioning Board Implementation Timetable ISB Approval June 12 July 12 ISN issued Jan 13 CORE and SITE SPECIFIC STAGE July 13 SITE SPECIFIC CLINICAL Jan 14 SITE SPECIFIC PATHOLOGY Jan 15 FULL COSD DATASET submitted in XML [email protected] Future Direction for Cancer Registries What is happening at the cancer registries and how it will support Trusts? National Cancer Registration Service Single England wide system Cancer Outcomes and 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 Local Feeds (COSD direct) Data sources - patient-level data National Feeds (inc COSD indirect) Radiotherapy Data (RTDS) Cancer Waiting Times Data from MDT software systems Chemotherapy Dataset (SACT) Local imaging systems ONS - Cancer and noncancer deaths Cancer screening programmes Bowel, Cervix and Breast Patient Administration Systems Local clinical data systems Encore National Pilots National PETCT imaging National cancer audits - Lung, Head and Neck, Upper GI and Colorectal Pathology full-text reports Hospital Episode Statistics (HES) Recurrent/Meta static Breast Audit Pilot CRUK Stratified Medicine (Sept 2011) 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 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 (under revision) Latest version of leaflet available from: http://www.ukacr.org/content/patient-information 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, diagnosis 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 Proposed Feedback Timetable Summary reports ~ Sept 13 First feedback reports ~ Mar 13 First submission - 7th Mar 13 Jan 13 CORE and SITE SPECIFIC STAGE July 12 ISN issued July 13 SITE SPECIFIC CLINICAL Standard clinical feedback reports ~ Mar 14 Jan 14 SITE SPECIFIC PATHOLOGY Jan 15 FULL COSD DATASET submitted in XML Future Feedback? The Future A single cancer registration system (ENCORE) for England COSD compliant Routine, timely feedback Improved registry/clinical partnership working Provide powerful data for local, national and international analysis