UGICR

UGICR monitors and reports clinical quality and outcomes for pancreatic, oesophagogastric, biliary, and primary liver cancers across participating Australian health services.

Key Features:

• Cancer scope: Covers pancreatic cancer (PC), oesophagogastric cancer (OGC), biliary cancer, and primary liver cancer.
• Modular implementation: Follows a staged approach with a pancreatic cancer module implemented first and an oesophagogastric module subsequently developed, each undergoing pilot phases.
• Recruitment criteria: Includes individuals aged 18 years or older who received care at participating public or private hospitals or private clinics in Australia unless they opt out.
• Governance: Overseen by a multidisciplinary steering committee with clinical working parties responsible for clinical governance and oversight.
• Quality indicators: Develops module-specific quality indicators and minimum datasets using a formal modified Delphi consensus process to guide analysis and reporting.
• Data integration: Integrates information from population-based cancer incidence registries, pathology databases, and hospital-coded data.
• Clinical data capture: Supplements integrated sources with manual abstraction from clinical records performed by data collectors.
• Data storage: Stores collected data in the Research Electronic Data Capture (REDCap) platform.
• Reporting: Produces regular risk-adjusted and benchmarked performance reports across quality indicators to identify variations in care and outcomes at the health service level.
• Patient-reported outcomes (PROs): Collects PROs to capture patient experiences alongside clinical data.
• Cohort profiling: Includes cohort profiles and results from one-year pilot phases for registry modules.

Scientific Applications:

• Clinical quality monitoring: Enables measurement and benchmarking of adherence to best-practice quality indicators for upper gastrointestinal cancers.
• Health services evaluation: Identifies variation in care and outcomes at the health service level through risk-adjusted comparisons.
• Quality indicator development and validation: Supports creation and validation of module-specific indicators via Delphi consensus and pilot data.
• Epidemiological and outcomes research: Provides systematic, multi-source data for research on treatment patterns and clinical outcomes in upper gastrointestinal cancers.
• Patient-centered outcomes research: Facilitates analysis of patient-reported outcomes alongside clinical and administrative data.

Methodology:

Integrates data from population-based cancer incidence registries, pathology databases, and hospital-coded data, supplements these with manual clinical-record abstraction by data collectors who enter data into REDCap, develops quality indicators via a formal modified Delphi consensus process, and performs risk adjustment and benchmarking for reporting.