The Commission is piloting the development of evidence- and consensus-based recommendations for PROMs for specific conditions to maximise clinical usefulness and minimise survey fatigue.
Deborah Mitchison, University of Technology Sydney, deborah.mitchison@uts.edu.au
The Australia and New Zealand Clinical Quality Registry for the Treatment of Eating Disorders (TrEAT Registry) supports clinical outcomes monitoring and reporting for people receiving eating disorders treatment. Participating services including private and public outpatient, day program, and residential eating disorder treatment centres in Australia and New Zealand. Clients at these services complete patient reported outcome measures before and throughout treatment. A feedback mechanism is employed whereby summaries of scores with norming data are sent immediately to clinicians to guide clinical decision-making. Service-wide reports are generated and benchmarked against the pooled registry data across services. Researchers use the registry to answer questions about eating disorder phenomenology and treatment. The TrEAT Registry captures clients aged 13 years and older, and all participating clients/caregivers provide informed consent for the use of their data to be included in the database for auditing and research purposes.
- Feedback to contributing clinicians
- Reported in Annual Report
- Quality assurance reports are provided to the executive of each listed clinic regularly, and benchmarked against pooled registry data. Funded research evaluations of treatment programs using the registry involve more comprehensive mixed methods analysis and reports to services, funders and governments.
- Core Set (Eating Disorder Examination Questionnaire; Clinical Impairment Assessment; Depression Anxiety and Stress Scale)
- Additional PROMs included as requested by individual services or to support research.
Measures are currently under co-review with clients and clinicians, and are expected to include a measure of treatment satisfaction.
New South Wales
- Appetite for Change, Crows Nest
- Basten & Associates Clinical Psychologists, Westmead; Basten & Associates Clinical Psychologists, Chatswood; EveryBody Psychology & Wellbeing, Bondi Junction;
- Redleaf Practice, St Leonards
Queensland
- Collective Health Co, Forest Glen
- Wandi Nerida Residential Eating Disorder Program, Mooloolah Valley
Western Australia
- 26 Richardson Street, West Perth
Australia - Wide
- Butterfly Foundation Next Steps virtual day program (national).
New Zealand
- Nurture Psychology, Auckland
Nil
Ethics reference: H14478
Western Sydney University Human Research Ethics Committee
Colin Royse, Melbourne Health, University of Melbourne, research@heartweb.com
The objective of the registry is to provide a platform for participating sites to enter data to measure post-operative quality of recovery after a surgical procedure. These data will be used to answer multiple research questions in the future, as well as to provide benchmarking data for recovery for specific operations. Specific research questions that will utilise the registry data will require separate HREC approval. The primary outcome measure tool is the Postoperative Quality of Recovery Scale (PostopQRS).
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with medical colleges
The Postoperative Quality of Recovery Scale (PostopQRS) is a survey to measure recovery from the patient's perspective. It is initially performed before surgery to measure the patient's baseline condition, and then recovery is measured at multiple time points after surgery and compared to their pre-surgery baseline. In simple terms, recovery occurs when the patient has returned to their baseline condition or better. The scale is multidimensional, capturing recovery in domains such as physiological, emotional, cognitive (brain function), pain and nausea and their ability to perform activities of daily living.
- Nil
Victoria
- Peter Maccallum Cancer Centre
- Royal Melbourne Hospital - City Campus
- The Royal Women's Hospital
Viet Tran, Royal Hobart Hospital, v.tran@utas.edu.au
The Tasmanian Emergency Care Outcomes Registry is a clinical quality registry (self-reported) that aims to monitor the quality of clinical care provided by Tasmanian Emergency Departments. The primary objective for determining the quality of clinical care is by measuring 30-day mortality and safety event data (morbidity).
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with hospital executive
- Shared with consumers
- Shared with medical colleges
- Reported to State/Territory health departments
- Reported in Annual Report
Nil
Nil
Tasmania
- Launceston General Hospital
- Mersey Community Hospital
- North West Regional Hospital
- Royal Hobart Hospital
Dr Jessica Orchard, The University of Sydney, jessica.orchard@sydney.edu.au
The Australasian Registry of Electrocardiograms in National Athletes (ARENA) is a clinical quality registry (self-reported). ARENA collects cardiac screening data for athletes over the age of 16 years, including ECGs and results of other cardiac tests from sporting organisations in Australia and New Zealand. It is led by researchers at the University of Sydney, in collaboration with other national and international experts, and based at the South Australian Health and Medical Research Institute (SAHMRI) Registry Centre. ARENA was launched in 2023, initially in Australia, with New Zealand to follow as funding allows. All sporting organisations conducting cardiac screening of athletes (including ECG) are eligible to provide data. Outcomes and diagnoses will be monitored regularly.
ARENA will provide a long-term international data repository to improve our understanding of ECG interpretation, cardiac screening and diagnoses, and the rates of major cardiac events in screened athletes. A unique aim is to address important evidence gaps in under-represented athlete groups, specifically female athletes and Indigenous populations. Results will inform policy and guidelines. The overall aim is to improve the quality of their cardiac screening programs and provide better cardiac care for young athletes.
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with consumers
- Shared with medical colleges
- Reported in Annual Report
- Reported in other public reports
- Shared with clinicians and sporting organisations - Reported in annual report (deidentified, aggregate data) - Presented at conferences and open-access journal articles (deidentified, aggregate data)
Nil
Nil
Sporting organisations that undertake cardiac screening of athletes.
Fraser Brims, Curtin University, fraser.brims@curtin.edu.au;lucap@curtin.edu.au
LUCAP is a clinical quality registry (self-reported) for lung cancer care in Australia. The platform enables the performance of continuous audit cycles against endorsed key clinical quality indicators (CQI) of care to identify where significant improvements can be made to deliver consistent, world-class care. The type of information LUCAP collects includes:
- how quickly people get tests
- what sort of tests are performed
- how quickly people get treatments.
Ultimately, LUCAP aims to improve the quality of care and outcomes for lung cancer patients in Australia by developing a culture of accountability and responsibility in institutions that treat lung cancer in Australia.
The key objectives of LUCAP are to:
- Implement a standardised and high quality data collection process across all jurisdictions in Australia
- Enable the generation of risk-adjusted reports on the quality of lung cancer care across Australia for consumers, healthcare providers and researchers, and provide close-to real time dashboards to facilitate clinical and quality improvement initiatives
- Enable the generation of high-quality research data for observational and/or registry-based studies, facilitating and enhancing novel research and new treatment approaches for lung cancer patients.
LUCAP is currently being implemented in the hospitals listed below, with the intention to expand to all hospitals across Australia (and New Zealand) in the future. LUCAP is supported by Cancer Australia and the peak lung health body the Lung Foundation Australia (LFA). The LUCAP Protocol is endorsed by the Thoracic Society of Australia and New Zealand (TSANZ).
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with hospital executive
- Shared with consumers
- Reported in Annual Report
- Open access journal articles
- Oral presentations at research conferences
Not at this stage, but potentially in the future
Not at this stage, but potentially in the future
New South Wales
- Campbelltown Hospital
- Liverpool Hospital
- St Vincent's Hospital (Darlinghurst)
- Wollongong Hospital
Queensland
- Royal Brisbane & Women's Hospital
- Sunshine Coast University Hospital
- The Prince Charles Hospital
Western Australia
- Fiona Stanley Hospital
- Royal Perth Hospital
- Sir Charles Gairdner Hospital
- St John Of God Midland Public & Private Hospital
Paul Fitzgerald, The Australian National University, tmsregistry.smp@anu.edu.au
The purpose of the Registry is the collection of outcome and safety data on the use of transcranial magnetic stimulation (TMS) and other brain stimulation techniques. The Registry will include any patients receiving TMS who are referred by their treating physician and consent to participate in data collection. The Registry will expand to include other brain stimulation techniques in the future. The outcomes measured will depend on their diagnosis.
- Registry website
- Peer-reviewed publications
- With the participants consent, clinical outcome data can be reported to their treating doctor/team via an automated system.
Various PROMS to measure changes in depression, PTSD, OCD, and other psychiatric symptoms, including:
- Patient Health Questionnaire-9 (PHQ-9)
- Impact of Event Scale-Revised (IES-R) (PTSD only)
- Obsessional Compulsive Inventory - Revised (OCI-R) (OCD only)
- Generalize Anxiety Disorder 7 - Item (GAD-7)
- Depression Anxiety and Stress Scale 21 (DASS-21)
- Side Effects
- Assessment of Quality of Life (AQoL-8D)
Nil
No sites. Registry works by referral by treating physician/team.
Joel Lasschuit, National Association of Diabetes Centres, joel@nadc.net.au
The Australian Diabetes Foot Registry standardises data collection in High Risk Foot Services (HRFS) nationally, providing an unprecedented opportunity for audit, benchmarking, quality improvement and collaborative research. HRFS deliver specialist interdisciplinary care to people with diabetes-related foot complications, including ulceration, osteomyelitis and Charcot foot. These services are established to reduce the healthcare and individual burden of diabetes-related foot complications by coordinating care, reducing hospitalisation and improving clinical outcomes. However, prior to establishment of the ADFR, siloed and often insufficient data collection practices impeded comprehensive outcome evaluation. With introduction of a national HRFS Standards and Accreditation program by the National Association of Diabetes Centres, the need for national data collection, centralised support and infrastructure to meet quality improvement standards was recognised. The primary objective of the ADFR is to develop a standardised Australian diabetes repository for HRFS. Secondary objectives are to evaluate service and clinical outcomes, perform national benchmarking, provide reports to participating services, and establish a platform for local and collaborative research. Data is prospectively and longitudinally collected on people with diabetes and one or more active foot complications attending a participating HRFS. The project has ethics approval under the National Mutual Acceptance Scheme with an opt-out consent approach (waiver of consent in WA and NT). Data and outcome domains span participant demographics, diabetes characteristics, comorbidities, ulceration characteristics and classification, Charcot foot characteristics and classification, referral processes, telehealth utilisation, interdisciplinary involvement, offloading practices, antibiotic prescription, hospitalisations, surgical interventions including amputation, service wait times, remission and recurrence of complications, and service separation.
- Feedback to contributing clinicians
- Shared with other clinicians
- Reported in an Annual Report to participating sites
Nil
Nil
Australian Capital Territory
- The Canberra Hospital
New South Wales
- Bankstown-Lidcombe Hospital
- Campbelltown Hospital
- Dubbo Base Hospital
- Gosford Hospital
- Liverpool Hospital
- Nepean Hospital
- Port Macquarie Community Health Campus
- Royal Prince Alfred Hospital
- Shoalhaven District Memorial Hospital
- St Vincent's Hospital (Darlinghurst)
- Tamworth Rural Referral Hospital
- Wagga Wagga Rural Referral Hospital
- Wollongong Community Health Centre
- Wollongong Hospital
- Wyong Public Hospital
Northern Territory
- Palmerston Regional Hospital
- Royal Darwin Hospital
South Australia
- Flinders Medical Centre
- Marion GP Plus Health Care Centre
- Noarlunga Health Service
- The Queen Elizabeth Hospital
- The Royal Adelaide Hospital
Tasmania
- Launceston General Hospital
- North West Regional Hospital
- Royal Hobart Hospital
Victoria
- Austin Health - Austin Hospital
- Ballarat Health Services
- Box Hill Hospital
- Goulburn Valley Health - Shepparton Campus
- Latrobe Regional Hospital
- Maroondah Hospital
- Monash Medical Centre - Clayton Campus
- Northeast Health Wangaratta
- St Vincent's Hospital (Melbourne) Ltd
- Western Health
Western Australia
- Bentley Health Service
- Fiona Stanley Hospital
- Joondalup Health Campus
- Fremantle Hospital And Health Service
- Royal Perth Hospital
- Sir Charles Gairdner Hospital
Northern Territory Department of Health and Menzies School of Health Research HREC: 2021-4131 (NT)
Paul Fitzgerald, The Australian National University, papregistry@anu.edu.au
The purpose of the AIPPAP Research Registry is the collection of outcome and safety data on the use of novel interventional pharmacotherapy approaches, including ketamine treatment and psychedelic-assisted psychotherapy for mental health disorders. The AIPPAP Research Registry will include any patients receiving MDMA, psilocybin, or ketamine who are referred by their treating physician and consent to participate in data collection. The outcomes measured will depend on their diagnosis.
- Registry website
- Peer-reviewed publications
- With the participants consent, clinical outcome data can be reported to their treating doctor/team via an automated system
Various PROMS to measure changes in depression, post traumatic stress disorder, obsessive-compulsive disorder , and other psychiatric symptoms, including:
- Patient Health Questionnaire-9 (PHQ-9);
- Impact of Event Scale-Revised (IES-R) (PTSD only);
- Obsessional Compulsive Inventory - Revised (OCI-R) (OCD only);
- Generalize Anxiety Disorder 7 - Item (GAD-7);
- Depression Anxiety and Stress Scale 21 (DASS-21);
- The Stanford Expectations of Treatment Scale (SETS);
- Ten Item Personality Inventory (TIPI);
- Side Effects;
- Assessment of Quality of Life (AQoL-8D);
- Psychological Insight Questionnaire (PIQ);
- Revised Mystical Experience Questionnaire (MEQ30);
- Multidimensional Health Locus of Control (MHLC);
- Collaborative Assessment and Management of Suicidality (CAMS);
- Self-efficacy to Manage Chronic Disease (SEMCD)
Nil
No sites. Registry works by referral by treating physician/team.