DAHNO and Cancer Registration

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DAHNO and Cancer Registration

• Chris Carrigan, National Coordinator, Cancer
  Registration

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Large Clinical Databases

• DAHNO and Cancer Registration
• Common Purpose and Mutual benefits
• Quality Assurance and Interpretation
• R.C.T./ Audit / Registration

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Cancer Registration

• A standard dataset is collected for all new
  incident cases
• For England, approximately 225,000 new cases are
  registered each year
• Of these, 8000 are head and neck cancers

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Registry/ DAHNO collaboration

• Key Partnership
• Data Quality Assurance
• internal quality/consistency of data
• produce first output analyses
• Provision of Population Denominators
• Data Analysis
• Collaboration through registries National
  Analysis Group, key staff from South West and
  Oxford

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Data Quality

• What is Data Quality?
• Quality Control
• Quality Assurance
• Manual vs. Automated

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Comparisons to DAHNO?
Medical Records
DAHNO System
Online Forms
Manual Collation
DAHNO Database
Automated Collation
Supplier Information Systems
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Manual vs Automated Assurance

• Manual
• Expensive
• Can be highly detailed and abstract
• Highly skilled
• Interpretation error
• Automated
• Cost efficient
• Requires multiple electronic sources
• Very specific
• Absolute (interpretation)
• What does each method test?

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Manual Reabstraction

• A time-consuming exercise (4 weeks of trained
  staff time for 71 cases)
• Significant variations, including
• Important details missed
• Lack of definition (e.g. site)
• Illogical details added

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Assuring Quality?

• Balance between Quality Control and Quality
  Assurance
• Not getting it right first time takes time,
  energy, effort and money to discover further down
  the line
• Improve the Quality Control on entry (unpopular)

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Why large scale databases?

• Cancer Registration
• NCASP Audits
• vs
• Randomised Control Trials

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Benefits of Size

• Comparative
• Across database
• Across other databases
• National
• Implementation
• Standards/Best Practice
• Consistency

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Examples Cancer Registration

• Comparisons
• National International
• Monitoring
• Clusters
• Follow ups
• Late effects of treatment
• Planning
• Projections

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Examples Causal

• Demonstrated that mesothelioma is caused by
  exposure to asbestos
• Public benefits
• Patient benefits

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Examples Planning and Prevention

• Skin melanoma rates have been increasing year on
  year
• Lymphoma and Oral cancer rates are higher in
  ethnic minorities
• Planning, Configuration
• Prevention

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Examples Follow Up

• Long term follow up of cohorts
• Late effects of treatment
• Hodgkins
• Direct patient benefit

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Examples National Audits

• Breast Cancer Clinical Outcome Measures (BCCOM)
• More mature data reflects higher status of
  breast cancer

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Nodal status of invasive cancers should be
known

• 26,439 invasive cancers
• diagnosed in 2002/2003
• were entered in BCCOM
• 32 were node negative
• 29 were node positive
• 39 had unknown nodal status

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No more than 7 nodes should be takento obtain a
negative nodal status

• Breast cancers diagnosed in 2002/2003
• 8,366 invasive cancers were node negative
• 4.7 lt4 nodes
• 29.4 had 4-7 nodes
• 62.4 gt8 nodes (for 2/3, gt10 nodes)
• For 3.5, number of nodes was unknown

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Invasive tumours treated by conservation surgery
should receive radiotherapy (RT)

• Breast cancers diagnosed in 2002/2003
• 10,342 invasive cancers received conservation
  surgery
• 66.7 received radiotherapy
• 8.4 did not receive radiotherapy
• 24.9 radiotherapy data were not available

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Node positive patients aged less than 60 should
receive chemotherapy (CT)

• Breast cancers diagnosed in 2002/2003
• 4,109 patients aged less than 60 were node
  positive
• 72.7 received chemotherapy
• 7.2 did not receive radiotherapy
• 20.2 chemotherapy data were not available

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Building the Bigger Picture

• Incremental benefit is in ADDING to a picture
• Using large clinical databases for identifying
  improvements in treatment is the shared objective

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Chris Carrigan National Coordinator - Cancer
RegistrationNational Cancer Action Team

• Chris.Carrigan_at_gstt.nhs.uk