The VLCR is designed to describe patterns of care following diagnosis of lung cancer. The aim of the Registry is to identify variation in treatment and health outcomes in contributing public and private hospitals, with a view to improving patient outcomes and quality of care.
The Registry provides population-based information on the patterns of care for lung cancer patients and assesses whether there is variation in health-related quality of life and survival following diagnosis of lung cancer in participating institutions.
Participants are eligible to participate in the registry if they are:
- Over the age of 18 years
- Have a newly-diagnosed confirmed primary lung cancer made by tissue diagnosis or clinical grounds.
- Diagnosed within the time frame specified for inclusion. This date will vary per institution.
- Have a previous history of lung cancer, and they are representing with a new second primary.
Patients are excluded if:
- Patients present with progressive or recurrent disease diagnosed before the specified site commencement date.
- The patient has chosen to opt-out of the registry
- The patient presents with a secondary lung cancer (metastases to the lung from another primary site)
- Potential participants are identified through hospital admission data extracts sent to the VLCR by participating public and private hospitals.
- The Registry uses an opt-out approach for recruitment (approximately 3% opt-out rate), with a waiver of consent for deceased patients.
- Participants are sent a Participant Invitation Letter and Participant Information Booklet. Participants or their proxy have two weeks from the date on the Participant Invitation Letter to opt-out before any of their health information may be collected.
- Participants can opt-out at any time and request their data be removed from the Registry.
- Clinicians are not required to collect data for the VLCR. Data is electronically collected from hospital admission data extracts, manually collected from medical records by trained data collectors and via data linkage with Births, Deaths and Marriages, Victoria and the Victorian Cancer Registry.
- The types of data collected includes: demographics, diagnostic and clinical information, and treatment information from referral to first treatment.
- Patient Reported Outcome Measures (PROMs) are currently collected for patients participating in a “Value-based healthcare” pilot study. These are assessments of overall health and quality of life as reported by patients at specific time points after along the healthcare pathway.
What are Clinical Quality Registries?
- CQRs systematically collect data on all episodes of care relating to a patient’s diagnosis of a particular disease (i.e. lung cancer), with the aim of improving patient outcomes through the assessment of the quality of care provided by healthcare institutions.
- Data are used to inform pre-determined, disease specific quality indicators (QIs) and participating sites are benchmarked against these QIs in regular reports.
- When outliers are identified, sites are responsible for investigating the cause and implementing changes where necessary.
What is a quality indicator?
Quality indicators are the aspects of care that the VLCR will measure to assess the quality of care given to participants in the registry. Quality indicators are based on published evidence or agreed ‘best practice’ and have been developed by the VLCR’s clinical working parties. e.g. days from diagnosis to first anti-tumour treatment; percentage of patients who received a referral to palliative care
Is the VLCR collecting Patient Reported Outcome Measures?
The VLCR is currently collecting Patient Reported Outcome and Patient Reported Experience measures as part of a “Value-based healthcare (VbHC)” sub-study that has recruited five Victorian health services. The VbHC study is using validated tools EORTC [QLQ-C30 and QLQ-LC-29] and selected questions from the VAHI Patient Experiences of cancer Care Survey (PECCS) to understand patient outcome measures of most value to consumers receiving lung cancer care.
Why is this project being conducted?
This registry has been established to improve both the quality and length of survival for Australians with lung cancer. Clinical quality registries achieve improvements in care primarily by informing health care providers how they are performing, compared with others. If a provider is falling behind on a performance indicator, compared with others, this provides them with both the information and motivation to improve. This feedback loop is designed to reduce unwarranted variation in care and improve compliance with clinical guidelines.
Who is operating the VLCR?
- The VLCR is run by the Cancer Research Program (CRP) within the School of Public Health and Preventive Medicine at Monash University. The VLCR is made operational by Coordinating Principal Investigator A/Prof Robert Stirling and the VLCR Coordinator is Ms Margaret Brand (firstname.lastname@example.org).
- The development and operation of the VLCR is overseen by a Steering Committee consisting of respiratory and thoracic specialists, medical and radiological oncologists, consumer representatives, government and industry partners.
Can clinicians access their registry data?
Clinicians contributing data to the VLCR, can request their own data from the VLCR Coordinator by making a data request.
What types of data are collected?
The types of data collected includes: demographics, clinical and diagnostic information, and treatment information.
Please contact the VLCR Coordinator for more detailed information regarding what is collected.