Cancer Outcomes and Services Dataset: Implications for clinical teams

Cancer Outcomes and Services Dataset: Implications for clinical teams Mick Peake Clinical Lead, NCIN National Clinical Lead, NHS Cancer Improvement Consultant & Senior Lecturer in Respiratory Medicine, Glenfield Hospital, Leicester

Why are we doing this the impact of information? 31 Days - CWT Peer Review 2010/11

Why are we doing this newer Information? Routes to Diagnosis

Age-standardized FCE Breast Lung Colon Skin H&N FCE / incidence Bed-days / PCT incidence Age-standardized /100,000 PCT 1 PCT 1 PCT 2 PCT 3 Age-standardized /100,000 FCE Age-standardized /100,000 Excess Bed-days Male PCT 1 Female PCT 1 Male UK Female UK FCE / incidence Average LoS / FCE Age-standardized /100,000 Age-standardized /100,000 % of cancer deaths in the Hospice % successfully quit % compliance Rate per 1000 women screened % of all TWRs % of cancer deaths in hospital % 31 days meeting National Standards % successfully quit % compliance % of all TWRs % of cancer hospital deaths by Trust % of women screened % 62 days meeting National Standards # not referred as TWR /100,000 % meeting TWR standard # TWR with cancer Diagnosis /100,000 # not referred as TWR /100,000 # not referred as TWR /100,000 % meeting TWR standard # TWR with cancer Diagnosis /100,000 There are 100s of aspects that must be taken into account when making decisions about a Clinical Service Actual incidence Survival PCT-1 Source: CIS, Date Prevalence LUNG Cancer trends per Male Female cancer type and PCT Source: CIS, Date PCT 2 PCT 3 Choose trust 1 2 3 Choose admission type Choose procedure All All Episodes by trust (not normalisied) - LUNG Trust 1 Trust 2 Trust 3 Activity per Source: HES, Date All Trusts admission Choose PCT 1 Choose procedure All type and Activity PCT trend per PCT - LUNG PCT 1 1995 2000 2006 Source: HES, Date England average % bed-days above trim point 100% Drug budget PCT 1 PCT 2 PCT 3 per indication 1. 2. 3. 4. Excess Itembed-days by PCT Description LUNG (normalised by incidence) Prevalence All Cancers PCT 1 PCT 1 Source: CIS, Date Male PCT 2 PCT 3 PCT 2 PCT 3 Female LUNG incidence past and projections PCT 1 2001 2006 2016 Here commentary about assumptions made in projections Choose PCT 1 Choose procedure All Episodes by PCT (not normalisied) - LUNG Source: HES, Date Elective Non-elective Trust 1 Trust 2 Trust 3 Trust 4 5-year rolling average mortality LUNG 5-year rolling average mortality All Cancers 1995 2000 2006 Source: CIS, Date 1995 2000 2006 Source: CIS, Date Choose PCT 1 Choose procedure All Male PCT 1 Female PCT 1 Male UK Male PCT 1 Female PCT 1 Male UK Activity trend per PCT - LUNG PCT 1 England average Female UK Female UK Core present at meetings Named Core team Members % Compliance with # of core Members Present at meetings Source: C-Quiins Date All Cancers At ½ of meetings LC 1 LC 2 LC 3 LCT1 LCT2 LCT 3 At 2/3 of meetings All Localities % PCT Collective Measures Met Source: C-Quiins Date SHA 1 SHA 2 SHA 3 1995 2000 2006 PCt 1 PCT 2 pct 3 There Source: HES, Date is a wealth of information Data LCT2 Choose Trust 1 2 3 LCT1 LCT 3 User notes Jul Aug Sept Costs of emergency admissions by Trust (not Costs by FCE Add to basket All SHAs Source: CWT, CIS, Date normalised) - LUNG Source: Screening Date Actual % success Trust 1 Trust 2 Trust 3 numbers rate PCT 1 PCT 2 PCT 3 Rate of % success % of TWR meeting Standards quitters by quitters at 4 % Successfully quit at 4 weeks 100,000 pop weeks All cancers # TWR with cancer diagnosis - All cancers Target (99%) PCT1 % Successfully quit after 4 weeks PCT3 PCT 1 England PCT England All Trusts (self report) Source: HES, Date Source: HES, Date England Average Lung Breast Prostate Etc. Choose PCT 1 Choose Network Source: Choose HES, Scenario Date abc and network Drug Indication Manufacturer and PCT A B C Etc Status % costs due to excess bed-days 100% Planned expenditure of current drugs PCT 1 PCT 2 PCT 3 or Source: HES, Date Manage scenarios NICE guidance Cost per patient per annum ( ) Incidence per 100,000 Assumptions: England population = 55 million, Network population = 1m, PCT population = 100,000 Source: HES, Date PCT 1 PCT 2 PCT 3 Here the user could type action items that he/she considers important Excess Bed-days time trend - LUNG 1995 2000 2006 Source: HES, Date PCT 1 England average Number of patients expected in PCT / network per annum Total Costs per PCT / Network Source: HES, Date Expected total costs per drug ( ) etc Average LoS by PCT LUNG PCT 1 PCT 2 PCT 3 Previous year spend ( ) etc Zoom up Notes 1995 2000 2006 Source: IC, NHS Date Coverage Cancer Source: HES Date Detected TWR target Rate of cancer detected Women aged 50 64 % Not Referred as TWR 2005-2006 % of TWR with cancer diagnosis Source: CWT, CIS, Date % admissions without a diagnosis of cancer by PCT LUNG % Source: HES, Date % of cancer deaths in the Hospice Source: HES Date All cancers PCT 1 PCT 2 PCT 3 PCT 1 PCT 2 PCT 3 % TWR with Cancer Diagnosis All cancers (2006) PCT 1 PCT 2 PCT 3 % of cancer deaths in hospital All cancers PCT 1 PCT 2 PCT 3 Source: IC, NHS Date All Cancers LC 1 LC 2 LC 3 Coverage PCT 1 PCT 2 PCT 3 All Localities Test Results Test results 2005-2006 Women aged 25 64 Negative Dyskaryosis Data User notes Add to basket Trend % of TWR with cancer diagnosis Jul Aug Sept Source: CWT, CIS, Date % of 31 days meeting Standards Vs National Target All cancers - PCT1 Jul Aug Sept Source: CWT, CIS, Date PCT National Target of TWRs meeting standard (98%) % England Which Hospital - All cancers T1 T1 T3 T1 T1 T3 % PCT1 % PCT3 % All cancers - PCT1 PCT % % T1 T1 T3 % % England % 62 day trend PCT4 % % T1 T1 T3 % In trust and transfer breakdown Source: CWT, CIS, Date View Dyskaryosis Level 62 day trend PCT In house treatment Trust transfer # not referred as TWR All cancers PCT 1 PCT 2 PCT 3 Mild # of TWR with cancer diagnosis Source: CWT, CIS, Date PCT1 Source: CWT, Date % of 62 days meeting Standards Vs National Target All cancers - PCT1 National Target of TWRs meeting standard (995) England Jul Aug Sept All cancers PCT 1 PCT 2 PCT 3 PCT2 62 day cases breakdown all cancers % PCT1 100% July Aug Sept Source: HES Date In trust and transfer breakdown In Trust treatment Trust transfer Place of death per PCT of patient and trust # not referred as TWR - All cancers PCT PCT1 England Source: CWT, CIS, Date % of TWR meeting Standards - All cancers PCT1 trust and PCT PCT England Source: CWT, CIS, Date Jul Aug Sept # not referred as TWR Lung PCT 1 PCT 2 PCT 3 # TWR with cancer diagnosis Excess beddays per Jul Aug Sept cancer type,

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

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

Other data sets Radiotherapy Dataset (RTDS) Diagnostic Imaging Data Set (DIDS) Systemic Anti-Cancer Therapy Dataset (SACT) (UGI Audit)

CENTRAL NERVOUS SYSTEM BREAST COLORECTAL CHILDREN,TEENAGERS, YOUNG ADULTS GYNAECOLOGY HAEMATOLOGY HEAD & NECK LUNG SARCOMA SKIN UROLOGY COSD - Structure UPPER GI 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 Additional core data items including 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 (at the time of treatment decision) Stage components of RCPath datasets Includes recurrences Breast cancers to start with

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 RIS RIS RIS RIS RIS PAS/HES PAS/HES PAS/HES PAS/HES PAS/HES PATH PATH PATH PATH PATH CWT CWT CWT CWT PAS Radiology Pathology MDT National Feeds datasets and other sources e.g. CWT, Audits, RTDS, SACT, (ONS)

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 Cancer Waiting Times be used to identify reports for cancer investigations? Identified by registries to request reports for specified cancer Remote access to Radiology Information System (RIS) for registries Image Exchange Portal (IEP) future option? Use of Diagnostic Imaging Dataset (DIDS)? Free Text reports Data items extracted by registries Clinical oversight Summary feedback reports Radiology items recorded in MDT system Can send from both systems

Support

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

National Cancer Data Repository The NCDR allows researchers to access linked datasets without the need to handle identifiable data Links records from the eight English cancer registries, death registrations and Hospital Episode Statistics (HES) data Over 8.5 million cancer registry records dating back to 1985 Readily linked to other datasets such as SACT (chemotherapy) and RTDS (radiotherapy)

Systemic Anti-Cancer Treatment (SACT) programme Implementation April 2012 April 2014 Chemotherapy Intelligence Unit at Oxford CIU Covers all drug treatment for cancer in all settings Monthly upload from trusts; validation Three-monthly report of regimens by tumour site produced 97 out of 154 trusts supplying data to end September (63%) Database currently contains data on 46,595 patients

Number of Patients by Diagnostic Group All submitting trusts aggregated. Patients aged 16 and over. Data received for April - July 2012 Brain/CNS 414 (2%) Head and Neck 405 (2%) Other haematology 284 (1%) Other 1376 (5%) Leukaemia 772 (3%) Myeloma 890 (4%) Breast 6062 (24%) Gynae 1881 (7%) Upper GI 2071 (8%) Urology 2139 (9%) Lower GI 3734 (15%) Lymphoma 2172 (9%) Lung 2845 (11%)

Number of Patients by Diagnostic Group All submitting trusts aggregated. Patients aged 16 and over. Data received for April - July 2012

Top Regimens by Diagnostic Group Upper GI (Hepatobiliary) ICD10: C22-C24 All submitting trusts aggregated. Patients aged 16 and over Data received for April - July 2012

Top Regimens by Diagnostic Group Upper GI (Pancreas) ICD10: C25 All submitting trusts aggregated. Patients aged 16 and over Data received for April - July 2012

Top Regimens by Diagnostic Group Upper GI (Upper digestive tract) ICD10: C15-C17 All submitting trusts aggregated. Patients aged 16 and over Data received for April - July 2012

Staging Completeness (MDT) 2011/12 Lung Head and Neck Colorectal Gynaecological Breast Urology Upper GI HPB

Summary COSD is one of the key elements in a revolution in cancer data and intelligence Linked to other data sources will transform the range and timeliness of reports Data quality is key and clinical engagement leadership & leadership are vital

www.ncin.org.uk

Direct Provider data flows COSD TRUST DATAFLOWS NATIONAL REGISTRY DATABASE (COSD DATASET) KEY Trust Flows NO Trust Flows NO Trust Flows Trust Flows Trust Flows NATIONAL REGISTRY DATABASE (COSD DATASET) Trust Flows NO Trust Flows NO Trust Flows NO Trust Flows Data store Fully structured / coded N3 Network or other approved transmission medium Data flow HES extract Cancer Waits download Chemo summary Radiotherapy Summary ONS COSD Treatments Secondary Uses Service Open Exeter COSD Core and ALL Clinical COSD Path COSD Radiology Chemo Repository NatCanSAT Deaths Data Procedures / activity uploads Cancer Waits Upload SACT upload RTDS upload N3 Network or other approved transmission medium HOSPITAL PAS SYSTEM Cancer Services MDT System Laboratory system ` Radiology System E prescribing system Verify and Record Acute Trust / Cancer Centre

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