What data are collected? How, and who by?

It’s complicated… ONS data

Focus on the main data collections by trusts Two main types Cancer Information Standards National Cancer Audits Five standards and four audits (at present) Standards - mandated through NHS National contract and commissioning National audits - monitored through CQC and Quality Surveillance Programme (formerly Peer Review) Two main collection routes for cancer data from trusts PHE/NCRS HSCIC/CASU Other routine data and data collections such as HES and ONS deaths HSCIC collects most of the NHS data (including some cancer data) PHE/NCRS collates all cancer related data (some directly, some indirectly) 3

National audits Partnerships between clinical (Royal Colleges) and information services Four audits NBCA(NBOCAP) – Bowel NOGCA – Oesophago-gastric NLCA – Lung NPCA – Prostate DAHNO – Head & Neck currently no contract Breast Cancer - likely to be commissioned in 2015 Majority of audit data is also collected through COSD Try to upload monthly for audits as well as COSD Record in one place only for both COSD and audits 4

National Bowel Cancer Audit (NBCA)  Data submitted by all participating NHS Trusts / Hospitals (MDTs)  Case ascertainment in England: 94% (compared to HES)  Data completeness: 87% patients undergoing major surgery  Length of stay: large variation across SCNs (55% - 80% still in hospital 5 days after resection)  90 day post-operative mortality has fallen to 4.6% after major surgery  Overall 2 year survival: large variation across SCNs  Audit data used for Consultant Outcomes Publication 5

National Audits Consultant Outcomes Publications based on audit data COSD provides the routine data (Bowel audit only 4 additional items, lung all in COSD inc EGFR and smoking status) Good case ascertainment in established audits ( eg 94% Bowel) Developing PROMS/PREMS Increasing focus on using the data rather than collecting the data 6

NBCA - New contract 2015 – 18  Use redesigned minimum dataset (37 COSD and 4 audit-specific items)  Extend scope:  Look earlier in pathway Stage at diagnosis Where and how diagnosed  Audit of patients who do not have major resection Too frail Too little cancer Too much cancer  Look later in pathway Interventions Recurrence Long-term survival Further develop use of linked data (e.g. radiotherapy, chemotherapy, emergency laparotomy, intensive care) Establish feasibility of using information reported by patients 7

National Oesophago-gastric Cancer Audit (NOGCA)  Data submitted by all participating NHS trusts / hospitals (MDTs)  Case ascertainment: 80% tumour records / 95% surgical records  Linked to RTDS: 90.6% of radiotherapy records linked successfully  Over 1000 HGD cases submitted  Contract until June 2017 Audit data used for Consultant Outcomes Publication 8

Fall in both 30 and 90 day mortality post curative oesophagectomy and gastrectomy NOGCA Surgical Outcomes Oesophagectomy (%)Gastrectomy (%) Day mortality Day mortality Oesophagectomy (%)Gastrectomy (%) Day mortality Day mortality

National Prostate Cancer Audit Follows New model for national cancer audits Partnership between NCRS and professional bodies Based on COSD dataset routine collection Plus ~20 additional data items Data linkage by NCRS for analytical uses More timely collection and feedback Monthly submissions of data Regular feedback to clinical teams All audit reports on CancerStats – one site for cancer reports 10

National Lung Cancer Audit (NLCA)  Now uses COSD as its primary data source  This includes two new items - smoking status and EGFR status  Feedback on completeness to trusts May 2015  Annual Report December 2015  PROMS/PREMS element in development  Further information from: 11

Data Standards Five standards: CWT - Cancer Waits RTDS – Radiotherapy SACT – Chemotherapy DID – Diagnostic imaging COSD – Cancer Outcomes and Services COSD incorporates key audit fields and CWT fields 12

Cancer Waiting Times (CWT) – what’s new? Guidance document being updated  Cancer Waiting Times: a Guide Version 9 in progress  New data items to be collected from March 2016  NHS NUMBER STATUS INDICATOR CODE  REFERRAL REQUEST RECEIVED DATE (INTER-PROVIDER TRANSFER).  Change of submission type from March 2016  CSV replaced by XML submissions 13

Radiotherapy dataset (RTDS)  Previously collected and compiled by NatCanSAT (National Clinical Analysis and Specialised Applications Team)  Radiotherapy data will be collected and compiled by NCRS from April 2016  Exploring whether Commissioning data can be omitted as available forom other sources - ?just the key radiotherapy data items 14

Diagnostic Imaging Dataset (DID)  Record-level data from NHS Radiology Information Systems (RIS) in England Covers pathway – who, what, where, when etc But not reports  Now three years data and ready to link and assess impact of diagnostiic imaging on cancer outcomes  NHS staff can apply for access to the DID summary data  Further details:  Monthly provisional summary and annual reports by NHS England 

DID reports 16 NHS imaging activity in England by gender and age, Average period from date of test to date test report issued for Chest X- ray, by provider, Ultrasound activity by number of days from date of test request to date of test, by source of referral, 2013/14

Systemic Anti-Cancer Therapy (SACT) Monthly submissions from all trusts providing chemotherapy Currently to Chemotherapy Intelligence Unit in Oxford but moving into NCRS system Monthly, quarterly and annual reports available through website Coverage not yet complete for all trusts and cases Particularly haematology, paediatric and not hospital settings Some poorly collected data items eg Morphology, outcomes, performance status But new information never previously available 17

SACT – new information on chemotherapy March 14 to February 15 April 14 to March 15 Patients Receiving Drug Treatments 165,256165,883 Regimens Commenced282,646283,384 Cycles Commenced790,868805,326

SACT - Quality and completeness reports 19 Data completeness by diagnostic group Data completeness Trust Profile Data Quality Trust Profile

Cancer Outcomes and Services Dataset (COSD) – a reminder  Aligned and rationalised with other cancer datasets  Core subset incorporates registration data for national and international epidemiology etc  12 site specific subsets include key audit items for service and outcomes analysis etc  Include all recurrences and MDT meetings by July 2016  Pathology submissions in XML from January 2016 (structured data) – Plan by 1 st July 2015!  Key items:  Basis of diagnosis and morphology  Stage and performance status CNS contact Site specific audit items 20

How do we know it’s right? Clinicians are responsible for ensuring accurate data is recorded Make sure that you know how and when your data is submitted Agree a (manageable) system for checking accuracy Use the COSD portal regularly (ask for reports to be sent to you) 21

JAN FEBMAR APR MAYJUN JUL AUGSEPOCT NOV DEC NCRS Process Data NCRS JANUARY Data January: Level 3 Level 3 Report NCRS Reporting Portal Level 2 Report NCRS Reporting Portal Level 1 Report NCRS Reporting Portal COSD / Path PAS NHS Trust AUG

COSD portal – feedback reports 23

NHS TRUST HSCIC/CASU PHE/NCRS DID SACT CDS (HES) RTDS NOGCA (OG audit) NBCA (Bowel audit) COSD (HES) Procedures COSD (imaging) TestsReferral Diagnosis/PlanningTreatment COSD (MDT/ clinical) NLCA (Lung audit) NPCA (Prostate audit) COSD (Path) PAS RIS (imaging) LIMS (pathology) CANCER MANAGEMENT (MDT) E- prescribing Radiotherapy CWT

“Do once and share” Principle is to record once only on one system if possible Try to avoid transcribing from paper to electronic systems Try to use electronic systems where they are available CWT and most audit items are also included in COSD COSD submitted in multiple extracts from different systems (no need to duplicate entry) Try to avoid double entering data (eg audits can all be uploaded from local systems)

A burden shared… Most data is needed for clinical and/or patient pathway management Decide who is the best person to record the different data items Don’t leave it all to one person See who records the data items at the point of care Recording in MDT meetings can work – but needs to become routine 26

Thank you 27