NCASP, DAHNO and the Cancer Registries Working together to improve data completeness and quality

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NCASP, DAHNO and the Cancer RegistriesWorking
together to improve data completeness and quality

• Chris Carrigan, National Coordinator, Cancer
  Registration
• Val Saunders, NYCRIS Manager

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Cancer Registries General Background
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General Background

• Cancer registration national coverage of the
  population since 1962
• 12 cancer registries in the UK, 9 in England all
  are population-based
• Their boundaries do not necessarily match new
• organisational boundaries
• But their population basis gives them in-built
  flexibility to meet the changing demands of the
  new NHS geography

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Background (cont)

• ONS co-ordinates the data for the provision of
  national cancer statistics
• 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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Cancer Registry Infrastructure

• 10m per annum
• Continued Modernisation
• NHS IA/NPfIT Dataset Project
• Rules Repository Project
• Common Cancer Information Service
• Network and Public Health Focus

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Current Developments

• The new Cancer Registration Dataset (CRDS)
  (subset of the National Cancer Dataset) has full
  NHS ISB approval
• DSCN awaited
• All registries must be capable of receiving and
  processing the CRDS electronically by December
  2006
• Registries have developed Action Plans to achieve
  this

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Comparison of Cancer Datasets (extract)
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Registry/ DAHNO collaboration likely to encompass

• Data Quality Assurance
• Provision of Population Denominators
• Data Analysis
• On-going Audit Support
• Collaboration agreed via UKACR, analysts
• (from SW and Oxford) to look at internal
• quality/consistency of data and to produce first
• output analyses

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Registries and Data Quality
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Data Quality

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

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Why do we differentiate between quality control
and quality assurance? The Cancer Registry is
engaged in the collation of cancer registration
records for patients from a wide array of
different data sources. Our data sources are
extracts from data collected originally for
differing purposes at differing points along the
patient pathway and subsequently
Forms
ONS
Collation Process
Integrated Cancer Registration Database
NHS Trusts
Other Registries
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What do we mean by automatic? Quality checks made
by the system rather than manually
Medical Records
Cancer Reg System
Forms
Manual Collation
Integrated Cancer Registration Database
Automated Collation
Supplier Information Systems
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Comparisons to DAHNO?
Where is the Quality Assurance?
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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Automated Assurance Tools(led initially via
LUCADA collaboration)

• Cross-registry collaboration (led by Trent and
  Thames)
• Additional validations devised with Lead
  Clinician and Project Manager (cross-checks for
  consistency)
• 100 initially identified, essentials agreed

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Data QA pilot

• Small scale QA exercise using LUCADA data to be
  undertaken in the next 3 months by two registries
  (Thames and NYCRIS)
• Involves manual re-abstraction of the whole
  dataset by trained registry staff for randomly
  selected cases

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Registries and Completeness
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Population Denominators

• CRs have the definitive population-based figures
• and routinely produce baseline statistics for
• Traditional geography region health authority
• New geography GOR (PHO), SHA, PCT
• Providers Cancer Network, Trust
• CIS represents standard common web based platform
  available locally
• National data currently available for 2002
• Development of Fast-track service (6-9 mths)

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Provision of Baseline

• For NCASP
• In 2004,can provide target figures by
  geographical unit, 2 years behind real time
• In 2005, shorter timescale (12-18mths)
• In 2006, same operational timescale
• Immediate target benchmarks
• Within 2 years, real time quality control

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Provision of Early Analysis(the LUCADA
experience)

• 5 key Headline Indicators identified by
  Professional Group (overall, and by month of
  diagnosis)
• To be calculated on a regular basis

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LUCADA Headline Indicators

• No. cases recorded by each MDT (as of
  population served)
• of patients with anti-cancer treatment
• of patients with histological/ cytological
  diagnosis
• of patients reviewed by MDT
• of patients who had surgical resection

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LUCADA priority outputs

• First priority outputs identified, covering
• Demography and casemix
• Diagnostic and staging process
• Treatment
• Outcomes
• Clinical trials
• Data completeness report

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LUCADA next steps

• 1st formal report autumn 2005, likely to
  include analyses for
• Headline indicators
• 5 selected priority outputs
• Overall figures, plus cancer network or
  Trust-based analyses

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So what about DAHNO?

• Data collection for DAHNO project still at an
  early stage
• DAHNO Project Group to finalise expectations from
  the registries
• Some pointers from the LUCADA experience (e.g.
  agree headline indicators)