Welcome and Introduction

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Welcome and Introduction

• NCRI Consumer Liaison Group Meeting
• 12th February 2009, London
• Chris Carrigan, NCIN Head of Coordinating Team

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Agenda

• Data, Information, Intelligence, Informatics
• Organisation links
• Other external factors and initiatives
• Roles of the NCRI CLG Members

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Morning / Afternoon

• Morning
• Understanding the NCIN
• Purpose, objectives, products
• Information Governance
• Afternoon
• NCRI Informatics Overview
• Demonstration of ONIX

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NCIN Core Objectives
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NCIN Core Objectives

• Promoting efficient and effective data collection
  throughout the cancer journey
• Providing a common national repository for cancer
  datasets
• Producing expert analyses, based on robust
  methodologies, to monitor patterns of cancer care
• Exploiting information to drive improvements in
  standards of cancer care and clinical outcomes
• Enabling use of cancer information to support
  audit and research programmes

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NCIN Core Team
Chris Carrigan
Alison Stone
David Forman (0.2)
Di Riley
Michael Chapman
Mick Peake (0.2)
Catrina Jordan
Jon Shelton
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NCIN Current structure
Steering Group Chair Alex Markham
NCIN Team Chair Chris Carrigan
Clinical Forum Chair Mick Peake
Scientific Advisory Group Chair David Forman
SSCRGs
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Essentials for success

• Clinical engagement
• Credible data
• High level of data completeness
• Case mix adjustment
• Timely
• Reporting
• Easy access to clear, bespoke reports
• Real time on line Annual reports
• Targeting reports Clinicians Trusts SHAs
  PCTs etc
• Dissemination in Peer-reviewed settings
• Publication, Conferences, Workshops, etc
• Incorporating performance and outcome data into
• Commissioning
• Cancer Peer Review Service Improvement

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SSCRGs - membership

• The relevant major colleges and professional
  groups (including pathology)
• The lead cancer registry
• Any national audit group (e.g. NCASP) relevant to
  the tumour site(s)
• The relevant NCRI Clinical Study Group
• Patients (minimum 2 at least one of whom should
  ideally be a member of the relevant NCRI CSG)
• The major, relevant voluntary sector
  groups/charities
• The Director from the lead Cancer Network for the
  tumour site
• A member from the national cancer strategic
  team (DH, NCAT, Peer Review Team or NHS
  Improvement )
• The NCIN core management team.

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Potential pitfalls

• Duplication of existing work
• Alienation of factions/key players
• Lack of resource to fulfil expectation and ideas
  generated

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Main issues for SSCRGs

• Identification of current initiatives
• Support for data set development
• Identification of main clinical indicators
• Advising on co-morbidity
• Improving staging (engaging pathologists)
• Promoting clinical (and public) engagement
• Advising on reporting
• Making the most of links with the research
  community
• Supporting the use of data to change clinical
  practice

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Main issues for SSCRGs

• Identification of current initiatives
• Support for data set development
• Identification of main clinical indicators
• Advising on co-morbidity
• Improving staging (engaging pathologists)
• Promoting clinical (and public) engagement
• Advising on reporting
• Making the most of links with the research
  community (e.g. Biobanks)
• Supporting the use of data to change clinical
  practice Improving Cancer Outcomes Group

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CRGs Site Specific Data

• Consider what is available from all sources
• Co-ordinate data items across all groups
• Justification for inclusion
• Realistically collectable at a national level
• Data fields adhere to agreed standards
• Does it inform the decision to treat?
• Does it reflect current management?

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National Cancer Data Repository

• Registry-HES linkage 1995-2004 (England)
• 8.5 million tumour records from Registries
• c. 30 fields of data
• 34 million hospital in patient episodes
• c. 150 fields of data
• Enables novel analytical approaches
• ethnicity, comorbidity, surgery, bed-stay
• non-cancer outcomes, hospital footprints
• end of life resource use

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National Cancer Data Repository

• Potential linkages
• General Practice Research Database (sample)
• IMS hospital inpatient prescribing (sample)
• Cancer Waits (recurrence)
• National cancer screening databases
• National cancer audit databases (NCASP)
• Outpatient HES
• Multi-disciplinary team datasets (stage,
  comorbidity performance status)
• Radiotherapy (Apr 09) / chemotherapy (Apr 10)
  national datasets
• Clinical trials
• Genetic/biobank and other research datasets
• PCT cancer budget
• Peer review
• Scotland, Wales, Northern Ireland

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National Datasets matrix - example
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The Analytical and Data Linkage Potential of the
NCIN
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NCIN New outputs
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NCIN - next 12 months

• Initial outputs traditional registry statistics
• Requirement to develop focus on cancer care and
  outcomes
• Linked datasets (National Cancer Data Repository)
• Lead registry support
• Exploit existing datasets
• Add further datasets to repository
• Improve data availability quality standards

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Detailed Microsites
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..with detailed drill through
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• A national perspective on the surgical management
  and outcomes of colorectal cancer liver
  metastases
• Eva Morris1, David Forman1, James Thomas1, Phil
  Quirke2, Brian Cottier3, Graeme Poston4
• Colorectal Cancer Epidemiology Group, University
  of Leeds, Level 6, Bexley Wing, St Jamess
  Institute of Oncology, Leeds LS9 7TF
• Pathology Tumour Biology, Leeds Institute for
  Molecular Medicine, Level 4 Wellcome Brenner
  Building, University of Leeds, St Jamess
  University Hospital, Leeds, LS9 7TF
• National Cancer Services Analysis Team,
  Clatterbridge Centre for Oncology, Clatterbridge
  Road, Bebington, Wirral, CH63 4JY
• Department of Surgery, University Hospital
  Aintree, Longmoor Lane, Liverpool, L9 7AL

Background
Results

• The liver is often the first site of metastatic
  spread for colorectal cancer and up to 50 of
  patients may develop liver metastases
• If untreated such patients have poor survival
  but case series suggest that if it is possible to
  resect liver disease then survival can be
  significantly improved. No randomised trials
  exist, however, to confirm this benefit
• In addition, there is no strong consensus about
  what constitutes resectable liver disease and it
  is possible that the selection criteria for
  identifying those with resectable metastases
  varies between centres. This means the
  proportion of people accessing this potentially
  beneficial treatment may vary across the country.
• This study sought to compare the frequency of
  liver resections for hepatic metastases across
  England and to investigate the impact of this
  treatment on survival

• Between 1998 and 2001 68,307 patients underwent
  a major resection for colorectal cancer within
  the English NHS
• 1,483 of these patients went on to have a liver
  resection within three years of resection of
  their primary tumour
• The rate of hepatectomy increased from 1.6 of
  patients who had their primary resected in 1998
  to 2.7 of those who head their initial resection
  in 2001
• There was significant variation in the
  proportion of patients having a liver resection
  across networks (range 0.8 to 3.9) and hospital
  trusts (range 0.0 to 7.2)
• Crude five year survival following liver
  resection was 33.9 (95CI 31.3-36.5) from date
  of liver resection and 41.4 (95CI 38.8 to
  34.4) from the date of resection of the
  colorectal primary
• This survival rate was comparable to the
  survival of patients with Dukes stage C and
  significantly better to those with Dukes D
  disease who did not have their metastases
  resected.

Methods

• All colorectal cancer patients who received a
  major resection for their disease between 1998
  and 2001 were identified within the national
  colorectal cancer dataset (created by merging
  cancer registry data and Hospital Episode
  Statistics)
• The hospital careers of these patients were
  then tracked through HES to determined if any of
  these patients had a liver resection within 3
  years of resection of their primary disease
• The proportion of patients receiving a liver
  resection was then examined across English cancer
  networks and hospital trusts
• Kaplan Meier curves and log rank tests were
  used to examine the five-year survival of those
  patients with resected liver disease compared to
  others with surgically treated disseminated
  disease (Dukes stage C D patients) who did not
  have a liver resection.

Conclusions

• The rate of resection of liver metastases
  increased by 60 over the study period
• There was significant variation in the
  frequency of use of liver resections across
  cancer networks and hospital trusts
• The five year survival of patients who
  underwent liver resection was comparable to
  patients with Dukes C colorectal cancer.

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Potential sources of funding

• NCIN funding of infrastructure to support SSCRGs
• NCIN support for lead registries 2008/9
• NCIN site specific initiative fund 2009
• NIHR Health Service Research initiative call
  for bids January 2009
• NCAAG/HQIP (National Clinical Audit Advisory
  Group / Health Quality Improvement Partnership)
• The Health Foundation www.health.org.uk Closing
  the gap other initiatives
• NCRI Partners - ?Pharmaceutical industry

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National Clinical Audit Advisory Group (NCAAG)

• Advise the Department of Health and NHS Board
• Devise policy and strategy for clinical audit in
  England
• Steer the National Clinical Audit Patient
  Outcomes Programme (NCAPOP)
• Commissioning of audits carried out by HQIP
  Health Quality Improvement Partnership
  www.hqip.org.uk
• Academy of Royal Colleges
• Royal College of Nursing
• Long term conditions alliance
• Chair Nick Black (LSHTM)
• www.advisorybodies.doh.gov.uk/ncaag/

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New opportunities

• Core data managed centrally
• More timely reporting
• Revisit site specific clinical datasets
• Potential for more core national audits
• Interim outcome analysis via GfoCW
• Dataset linkage - Cancer registry / HES
• Others to follow

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Co-ordination

• All work streams co-ordinated by NCIN
• Staging/comorbidity review
• Review of MDT collection
• Chemotherapy
• Single reference point for communication
• Avoid duplication of effort
• Maintain a coherent work programme
• Agreed outputs
• Priority areas
• Pathology, staging, co-morbidity, chemotherapy,
  clinical datasets

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NCIN Clinical Stakeholdersworkshop, 11th March
2009

• To agree a common strategy for clinical
  engagement in NCIN
• To agree the priorities for the site-specific
  work programmes
• To identify commonalities (and differences)
  between site-specific approaches
• Chairs and lead registries already started work
  in this area, to inform detailed discussions on
  11th

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Potential links

• The Knowledge agenda
• Using cancer.nhs.uk more effectively
• SCRG links to NCASP and NHSI
• Use of the NatCanSat resource
• Managed under SLA By NCAT

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Discussion and Next Steps