COSD Roadshow Local Issues and Challenges Hilary Wilderspin; London Cancer Alliance 13 th April 2015 v2

Cancer in London Primary cause of death in 2013 Wide variation in incidence, mortality and survival by tumour type Important to understand data at this level of granularity Picture in London generally better than the rest of England as the population is younger, BUT Wide variation in incidence, mortality at CCG level Awaiting 1 year survival data for 2012 new diagnoses for more accurate assessment of survival rates

Primary cause of death in London – by disease group – ONS data 2013 Causes of deathNumbers All neoplasms (C00-97)13780 Diseases of circulatory system13551 Diseases of the respiratory system (J00-99)6647 Mental and behavioural disorders (F00-99)3355 Diseases of digestive system2138 Diseases of nervous systems1855 Accidents1852 Other/unknown/external causes1360 Diseases of the genitourinary system958 Endocrine, nutritional and metabolic diseases737 Infectious and parasitic diseases (A00-B99)553 In situ neoplams and diseases of blood (D00-89)432 Diseases of musculoskeltal system and connective tissue (M00-99)362 Total deaths47580

Cancer deaths by tumour type – ONS data 2013 Cause of DeathNumbers Stomach and digestive organs (C15-26)3842 Respiratory and intrathoracic organs (C30-39)3065 Haematology (C81-96)1143 Breast (C50)1071 Unknown primaries (C76-80)939 Male genital organs (C60-63)888 Gynaecology (C51-58)682 Urinary tract (C64-68)673 Head and Neck (C00-14, C30-32)497 Eye/Brain/CNS (C69-72)376 Sarcoma (C45-49)286 Skin (C43-44)221 Endocrine (C73-75)77 Other cancers20 All neoplasms (C00-97)13780

Comparative incidence and mortality Areas where London has higher rates of age-standardised incidence ( ) – 95% confidence interval Male – Larynx, Liver, Anal Canal and Anus, Sarcoma, Prostate, Multiple Myeloma Female – Thyroid, Liver, Multiple Myeloma Areas where London has higher rates of age-standardised mortality ( ) – 95% confidence interval Male – Larynx, Liver Female – Liver, Uterus

Incidence of lung (incl. trachea & bronchus) cancer, age-standardised rate per 100,000 European Standard Population, by NHS Clinical Commissioning Groups (CCGs) in London Cancer Alliance and London Cancer, 2010 to Incidence of lung (incl. trachea & bronchus) cancer (ICD-10: C33-C34) B & D = Barking & Dagenham, C & H = City & Hackney, H & F = Hammersmith & Fulham, H = Hillingdon, I = Islington, K & C = West London (Kensington & Chelsea), K = Kingston, L = Lambeth, R = Richmond, S = Southwark, TH = Tower Hamlets, W = Central London (Westminster), WF = Waltham Forest London Cancer London Cancer Alliance Source: Public Health England © Crown Copyright and database right All rights reserved. Ordnance Survey Licence number

Incidence of breast cancer, age-standardised rate per 100,000 European Standard Population, by NHS Clinical Commissioning Groups (CCGs) in London Cancer Alliance and London Cancer, 2010 to Incidence of breast cancer (ICD-10: C50) B & D = Barking & Dagenham, C & H = City & Hackney, H & F = Hammersmith & Fulham, H = Hillingdon, I = Islington, K & C = West London (Kensington & Chelsea), K = Kingston, L = Lambeth, R = Richmond, S = Southwark, TH = Tower Hamlets, W = Central London (Westminster), WF = Waltham Forest London Cancer London Cancer Alliance Source: Public Health England © Crown Copyright and database right All rights reserved. Ordnance Survey Licence number

The importance of COSD COSD is the source of data being used for national outcome measures; survival by stage, SACT mortality national audits including clinician level data; prostate, lung, ? others to follow clinical indicators for each tumour type use in peer review assessments which will be available to the CQC Therefore, improving cancer data quality is critical Increasing external focus on cancer information, especially in context of new cancer strategy Consequences for organisational reputation with patients, commissioners, charities etc.

Emerging analyses – NCIN/London KIT 1 year survival by stage – pan London/ICS, not at CCG level 30,60, 90 day post chemotherapy mortality - anonymised Routes to diagnosis - update Stage at diagnosis – COSD portal Additional service profiles in Haematology, HPB, Skin, Urology and Brain/CNS Clinical Headline Indicators/COSD level 4 conformance

Examples of LCA comparative analyses Best practice pathway compliance metrics – use of HES and linked data items from COSD Cancer Waiting Times Treatments e.g. immediate breast reconstructions, resection rates, laparoscopic v open surgery rates, door to needle time for neutropenic sepsis National Cancer Patient Experience Survey Systemic Anti Cancer Therapy datasets – regimen by tumour type by provider Data quality monitoring – COSD, SACT

Data Quality Challenge COSD is a major challenge for providers and for a wide range of their staff – MDTs, Pathology, Radiology, Chemotherapy, Radiotherapy Systems, processes and people – all have to be aligned Requires senior leadership commitment There is not a magic bullet Whilst there has been significant improvement in London, particularly in staging data completeness, but there is still a long way to go

1. Staging completeness by region Source – COSD portal level 2 reports Numerator – Denominator – L2.1i – Number of Cancers which at Stage-able Numerator – L2.1j – Number of Cancers with Full Stage at Diagnosis Benchmark set – 70% Area Number of cases diagnosis Number stageabl e Number with full stage % stageable fully staged London Cancer Alliance % Merseyside and Cheshire % London Cancer % Greater Manchester, Lancashire & South Cumbria % Wessex % South West % South East Coast % Yorkshire And The Humber % East of England % West Midlands % East Midlands % North East, North Cumbria, And North Yorks % Thames Valley % England Overall % Collated by Stephen Scott & Salma Abadi In strictest confidence – For NHS internal use only

2. Basis of diagnosis completeness by region Source – COSD portal level 2 reports Numerator – Denominator – L2.1a – Number of Cancers Diagnosed Numerator – L2.1d – Number of Cancers with Basis of Diagnosis Benchmark set – 70% Area Number of cases diagnosis Number with basis of diagnosis % diagnosed with basis of diagnosis Merseyside and Cheshire % North East, North Cumbria, And North Yorks % East of England % Yorkshire And The Humber % Wessex % Greater Manchester, Lancashire & South Cumbria % South West % West Midlands % Thames Valley % South East Coast % London Cancer % East Midlands % London Cancer Alliance % England Overall % Collated by Stephen Scott & Salma Abadi In strictest confidence – For NHS internal use only

5. Proportion of cases diagnosed, with CNS code submitted Source – COSD portal level 2 reports Numerator – Denominator – L2.1a– Numbers of Cancers Diagnosed Numerator – L2.1f – Number of Cancers with a CNS indication Code Submitted Benchmark set – 70% Collated by Stephen Scott & Salma Abadi In strictest confidence – For NHS internal use only Area Number of cases diagnosis Number of cases with CNS code sumitted % of cases with CNS code submitted North East, North Cumbria, And North Yorks % East of England % Thames Valley % Merseyside and Cheshire % Wessex % West Midlands % Yorkshire And The Humber % London Cancer Alliance % Greater Manchester, Lancashire & South Cumbria % South East Coast % South West % London Cancer % East Midlands % England Overall %

Challenges Providers Ensuring high quality cancer data capture and reporting Greater transparency and granularity of published data e.g. provider level outcomes, clinician level outcomes Commissioners Develop understanding of cancer data and analysis for their population - not just cancer waiting times Need to understand services at pathway and tumour level to improve services and outcomes Public Health England High demand for data – ICSs and TCST Timely access and feedback to clinical teams and continuing data improvement work