Yorkshire Cancer Research Yorkshire Bowel Cancer initiative

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Yorkshire Cancer Research Yorkshire Bowel Cancer initiative Phil Quirke, Eva Morris, Paul Finan, Nick West, Penny Wright, David Sebag- Montefiore, Matt Seymour University of Leeds

What s the problem?

% Survival 1990 s Rectal cancer - surgically treated cases in the Yorkshire Region - % survival by years since diagnosis vs Basingstoke 100 80 60 40 20? Position in 2016? TME? Low rectal cancer 68% 51% 46% 35% 0 0 1 2 3 4 5 Years since diagnosis

Colon cancer Stockholm English hospitals 1,0 Cumulative Proportion Surviving (Kaplan-Meier) 0,9 Cumulative Proportion Surviving 0,8 0,7 0,6 0,5 0,4 0,3 0,2 0,1 0,0 0 20 40 60 80 100 Time (months) 1 2 3 4 5 6 7 8 9

Aim: To improve outcomes by in depth analysis of performance of bowel cancer teams and developing new/improved care pathways to identify and address weaknesses in the management of bowel cancer in Yorkshire. We will improve survival by as much as 15%. Link with Yorkshire and Humber network Lisa Marriott Matt Hale

Yorkshire and Humber Cancer SCN Successor of YCN and Yorkshire and Humberside Coast Network 2015/16 Bowel cancer priority Follow up policy Priorities decided but are complimentary to ours and would benefit from our approach Lisa Marriott/Matt Hale Together we may be very powerful at improving outcomes

Collaborators University of Leeds Eva Morris Paul Finan Surgery Nick West Pathology David Sebag-Montefiore Clinical Oncology Penny Wright Proms Matt Seymour Medical Oncology/NCRN Others who want to help Associates Lisa Marriott YHCN Matt Hale Educators and advisors - Anders Bertelsen - Gina Brown - Brendan Moran - Robin Kennedy - Bill Heald - Torbjorn Holm - Soren Laurberg - Werner Hohenberger

Yorkshire and Humber hospitals Voluntary participation encouraged by Cancer network/purchasers Patient consent for parts Data access Specimen photographs, tissue blocks and HNPCC screening PROMS Establish baseline data year 1 Agree scoring system (Pahlman) Look for continued improvement not blame Compared to gold standard Basingstoke? Compared to national data

YCR Y&H CN Partnership How well do we do? Educational interventions What are the weaknesses

Aim 1 Obtain permissions, create the data base generate the best data Create the best information database All cases treated by NHS in Yorkshire Integrate databases - Health Episode Statistics - Cancer registry - Basic Pathology data - Radiotherapy database - Chemotherapy prescriptions - Screening data - National data - HES - COSD6&7 - Chemo/Radio databases Create new databases - Patient reported outcomes and LARS - Quality of service/feedback/improvements - Full pathology dataset? - Full radiology dataset? Resource 2 grade 8 posts to establish database and fill and analyse it Consent/data research nurses Give it back to you so you know how you are doing

Aim 2 Analyses 1-5 year survival 30 day mortality Frequency of operative intervention Radiotherapy usage and pattern Chemotherapy usage and pattern Morris et al Screening data FOBT Bowelscope Social class effects Screening uptake Local excision rates Frequency of abdominoperineal excision Referral for liver resections Patient outcomes/lars and satisfaction Overall score

Pathology Quality of pathology Stage Positive Circumferential Margin rate Node retrieval % High risk features - EMVI - Extent of extramural spread - Peritoneal involvement - pt3a,b,c Quality of surgery Photographs and central review Quantitation TME APE Mesocolon

Pathology Assessment of quality of surgery Margin positive rates Node retrievals % High Risk stage II Resource: Technician for measurement Testing case

Radiology Proformas Frequency of use Quality of radiology - Rectum - Colon Accuracy Correlation with Pathology Stage EMVI Extramural spread Radiologist time

Percentage of patients receiving a liver resection within three years of resection of their colorectal primary Percentage of patients Previous examples of control data Risk adjusted 30 day mortality English hospitals English radiotherapy variation Early deaths 8.0 Use of hepatic resection APE excision rates Use of laparoscopic surgery 7.0 100% 6.0 80% 5.0 4.0 60% 3.0 40% 2.0 20% 1.0 0.0 Trusts 0% APER Hartmanns Colostomy AR Other

Outcomes Baseline analyses and scoring Survival Recurrence Patient reported outcomes PROMS and LARS Screening uptake Operation type Variability of practice Surgeons Pathologists Radiologists Radiotherapists Oncologists Compared to England data where available

Aim 3 Other initiatives Patient reported outcomes from Yorkshire Hospitals New website and use Central submission of blocks to Leeds for screening for HNPCC and targeted therapies Pathway created Asked for consent for further research on material

Aim 4 Interventions Surgical tuition Total Mesorectal excision Abdominoperineal excision Mesocolic excision with high tie Local Excision Pathology tuition Cut up Reporting Proforma Methylene blue injection Radiology tuition Technique, proforma and interpretation Mesocolic excision with high tie Radiotherapy tuition Chemotherapy tuition Screening uptake tuition

Aim 5 Re-audit and repeat the circle How well do we do? Educational interventions What are the weaknesses Design second round of education 160K budget over the 5 years

What are we trying to do? Reduce deaths from bowel cancer by: Identifying causes of failure Identifying improvements and education necessary Undertaking training Implementing them into practice through local/regional guidelines Identifying continuing sub-optimal practice Repeating the process Improve our understanding of PROMS Improve diagnosis of NHPCC Improving access to targeted therapy Extension of process to other cancers

Milestones Year 1: Create local/national baseline data and create novel datasets on patient reported outcomes, quality of surgery, patterns of radiology, radiotherapy and drug usage. Create agreed pathways and mechanisms for testing for possible genetic causation and sensitivity to new targeted drugs. Implement data collection and establish feedback loops to local multidisciplinary teams. Year 2: Agree and perform the educational and systems interventions within each Trust whilst continuing data collection. Year 3: Review data flows, re-audit the data. Implement collection of further indicators of quality of delivery of the service. Year 4: Identify second round of educational and systems interventions and reassess areas where performance has not improved and develop an alternative intervention. Year 5: Re-audit the programme and the outcomes compared to national data to determine the effectiveness of the programme and the level of improvements in outcomes obtained and the cost per improvement identified. Benefit seen in years 2-5.

Structure Steering group YCR programme holders + YCN plus lay representation Operational committee Core plus project and data managers Specialist group committees to review data and determine appropriate educational initiatives to the steering committee. Surgery Pathology Radiology Oncology Med/Clin

Participation Each MDT determine participation YES full data collection, full data feedback, access to educational initiatives and input into programme. No Background data collection only. Review the need for differing levels of participation Platinum Gold Silver Bronze Proms data collection Tissue consent and feedback

Tissue Need consent HNPCC screen on block of tumour dmmr negative go on to Braf mutation testing If Braf wild type then refer to Regional genetics service with gene identified to be sequenced Therapeutic screen as relevant Her2, TRK, new novel genes for Focus 4 if patient consents

Can we raise the bar in Yorkshire

First YCR network event 15 th June 2016 here Data and discussions

If it works we may be able to get a phase 2 funded.