title: The Victorian Lung Cancer Registry pilot: improving the quality of lung cancer care through the use of a disease quality registry.
abstract: BACKGROUND
  Lung cancer remains a major disease burden in Victoria (Australia) and requires a complex and multidisciplinary approach to ensure optimal care and outcomes. To date, no uniform mechanism is available to capture standardized population-based outcomes and thereby provide benchmarking. The establishment of such a data platform is, therefore, a primary requisite to enable description of process and outcome in lung cancer care and to drive improvement in the quality of care provided to individuals with lung cancer.
  
  
  METHODS
  A disease quality registry pilot has been established to capture prospective data on all adult patients with clinical or tissue diagnoses of small cell and non-small cell lung cancer. Steering and management committees provide clinical governance and supervise quality indicator selection. Quality indicators were selected following extensive literature review and evaluation of established clinical practice guidelines. A minimum dataset has been established and training and data capture by data collectors is facilitated using a web-based portal. Case ascertainment is established by regular institutional reporting of ICD-10 discharge coding. Recruitment is optimized by provision of opt-out consent.
  
  
  RESULTS
  The collection of a standardized minimum data set optimizes capacity for harmonized population-based data capture. Data collection has commenced in a variety of settings reflecting metropolitan and rural, and public, and private health care institutions. The data set provides scope for the construction of a risk-adjusted model for outcomes. A data access policy and a mechanism for escalation policy for outcome outliers has been established.
  
  
  CONCLUSIONS
  The Victorian Lung Cancer Registry provides a unique capacity to provide and confirm quality assessment in lung cancer and to drive improvement in quality of care across multidisciplinary stakeholders.
authors.affiliation: Department of Allergy Immunology & Respiratory Medicine, The Alfred Hospital, Commercial Rd, Melbourne, VIC, 3004, Australia, r.stirling@alfred.org.au.
authors.forename: Rob G
authors.initials: RG
authors.lastname: Stirling
authors.forename: S M
authors.initials: SM
authors.lastname: Evans
authors.forename: P
authors.initials: P
authors.lastname: McLaughlin
authors.forename: M
authors.initials: M
authors.lastname: Senthuren
authors.forename: J
authors.initials: J
authors.lastname: Millar
authors.forename: J
authors.initials: J
authors.lastname: Gooi
authors.forename: L
authors.initials: L
authors.lastname: Irving
authors.forename: P
authors.initials: P
authors.lastname: Mitchell
authors.forename: A
authors.initials: A
authors.lastname: Haydon
authors.forename: J
authors.initials: J
authors.lastname: Ruben
authors.forename: M
authors.initials: M
authors.lastname: Conron
authors.forename: T
authors.initials: T
authors.lastname: Leong
authors.forename: N
authors.initials: N
authors.lastname: Watkins
authors.forename: J J
authors.initials: JJ
authors.lastname: McNeil
mesh_terms: D019985:Benchmarking / Q000592:standards*; D002289:Carcinoma, Non-Small-Cell Lung / Q000175:diagnosis / Q000401:mortality / Q000628:therapy*; D006801:Humans; D008175:Lung Neoplasms / Q000175:diagnosis / Q000401:mortality / Q000628:therapy*; D010043:Outcome and Process Assessment, Health Care / Q000592:standards*; D010865:Pilot Projects; D058996:Quality Improvement / Q000592:standards*; D019984:Quality Indicators, Health Care / Q000592:standards*; D012042:Registries / Q000592:standards*; D055752:Small Cell Lung Carcinoma / Q000175:diagnosis / Q000401:mortality / Q000628:therapy*; D013997:Time Factors; D016896:Treatment Outcome; D014739:Victoria / Q000453:epidemiology