NCIN: Current and future outputs

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NCIN Current and future outputs
NCRI Consumer Liaison Group Feb 12th 2009

• David Forman
• Information Analysis Lead

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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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Post-operative mortality from colorectal cancer,
1998-2004
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Post-operative mortality fromcolorectal cancer,
1998-2004
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Variation in use of hepatic resection for
colorectal cancer liver metastases across
hospital trusts
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Five-year survival fromcolorectal cancer
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Rectal Cancer Surgery
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Risk adjusted APE rate by Trust
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Responses to the Gut paper

• appalled by naivety
• casemix factors entirely absent
• clinician-free
• HES data ..poor qualitybased on non-medical
  coding
• question the underlying agenda
• flawed conclusions

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Health Warnings

• Datasets are more extensive and more complete
  than previously available
• But based on routine NHS sources collected for
  admin and not specific audit
• Can take all measures to quality control data but
  there will (always) be inaccuracies
• Case-mix adjustment will (always) be inadequate
• League tables (always) create winners and losers
• Funnel plots (always) create extreme outliers

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Dealing with data concerns

• Ensure robust methodology
• Optimal statistical techniques
• Peer reviewed publications
• NCIN Scientific Advisory Group
• Ensure professional buy-in
• No surprises
• Engage professional bodies
• Alert poor performers

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Dealing with data concerns

• Encourage open culture
• Open reporting the professional norm
• Publication is only route to data improvement
• Freedom of information outweighs institutional
  confidentiality
• Learn from high achievers rather than witch hunt
  of poor performers
• Provide opportunities to question data integrity

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Cancer registry lead areas

• Lung Thames
• Breast WMCIU
• Colorectal NYCRIS
• Urology SWCIS
• CNS ECRIC
• Gynaecology Trent
• Head Neck Oxford

• Skin SWCIS
• Upper GI Thames
• Sarcoma WMCIU
• Haematology NYCRIS
• Children CCRG
• Teenage Young Adult NWCIS

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Colorectal cancer intelligence work programme

• Post-operative mortality
• Variation in consultant workload
• Survival in relation to ethnicity
• Impact of PELICAN surgical training
• Hepatic resection for metastases
• Follow-up of RCTs
• Impact of screening programme
• Outpatient attendance patterns
• Linkage with genetic datasets
• Linkage with GPRD
• International care comparisons Australia,
  Sweden, Netherlands and France
• Supported by NYCRIS Cancer Research UK
• Bobby Moore Fund Career Development Award

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Better information on cancer services and
outcomes will enhance patient choice, drive up
service quality and underpin stronger
commissioning Cancer Reform Strategy Dec 2007
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The best cancer information system in the world

• Quantum improvements in data collection
• Providers of cancer care mandated by contract to
  provide defined datasets electronically
• Exploit potential of NHS and research data
  linkages
• Transformation of cancer information landscape
• Better availability and presentation of national
  data for professionals, patients and public
• New linked datasets as aides to research
• Clinical care and outcomes properly monitored for
  service improvement and patient benefit

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Early outputs....

• UK incidence mortality by network
• One year survival trends
• New UK and regional prevalence estimates
• Incidence in relation to deprivation

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National Cancer e-Atlaswww.ncin.org.uk/eatlas
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Year one further outputs

• An electronic toolkit, bringing together
  information on cancer to enable the benchmarking
  of services and to inform commissioning (in
  collaboration with the Cancer Action Team)
• Cancer incidence and survival in relation to
  ethnicity (in collaboration with CRUK)
• Cancer care patterns among teenagers and young
  adults (in collaboration with CRUK and NWCIS)
• Evaluation of the potential for following up
  patients who have been in clinical trials over
  long periods (in collaboration with the NCRN)
• Exploitation of linked service and research
  datasets

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Publication policy

• Analyses of topics not previously available
  (e.g. ethnicity, prevalence, trial demographics)
• Avoid duplication of existing outputs
  (e.g. CRUK Statistics)
• User friendly and readily accessible
• Professional and public dissemination
• Collaborative basis
• Encourage employment of state of art
  methodologies for analysis
• Ambition for full UK coverage

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Quite simply, we want to have the best cancer
information service in the world by 2012 Mike
Richards Britain against Cancer Dec 2007