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Clinical Registries

What are Clinical Registries?

Clinical registries is a term used to refer to a standardised collection of clinical and patient outcomes data on a national scale. The aim of a clinical registry is to collect population-based data in different disease areas, with the hopes of better understanding treatment outcomes and the quality of health care services in order to ultimately improve outcomes for patients.

Clinical registries are mostly developed by groups of research and health care professionals. They are typically independent of the health care system (e.g. hospitals), and may be based in a university or other independent organisation. Any organisation which runs a clinical registry should also have an independent governance structure to guide the data collection and clearly articulate the use of clinical data.

Examples of how the data may be used are:

  • to support the establishment of national benchmarks (i.e. to compare the performance of services who are treating the same conditions against each other and establish a national “average”);
  • to better understand factors which lead to clinical variation;
  • to improve the effectiveness of care; and
  • to conduct population-based research projects.

There is evidence that suggests participation in clinical registries alone will reduce variation in patient outcomes.

What is Ramsay doing in this area?

Ramsay Health Care supports participation in clinical registries and has actively sought to establish participation in key priority areas. As an organisation, we seek to work with clinical registries to better understand our services and to ensure that we are working with our doctors, nurses and allied health professionals to continually improve outcomes for our patients.

There are currently 31 national clinical registries listed by the Australian Safety and Quality Commission. 

How do clinical registries improve the quality of your care at Ramsay?

To date, Ramsay is participating in 26 clinical registries. We work with each registry to develop Ramsay specific reports that can be used to identify the outcomes for our patients. Based on the findings of these reports, we then work actively with our doctors, nurses and allied health professionals at each location to understand how we are performing and the ways in which we can continue to improve our patients’ outcomes and the quality of the care that they receive.

The following provides some information about the outcomes and other clinical data collected by clinical registries that Ramsay is currently working with:

The primary aim of the Bariatric Surgery Registry is to measure outcomes for patients undergoing bariatric surgery across public and private hospitals in Australia and New Zealand. The registry was established in 2009 and is a part of the School of Public Health and Preventative Medicine at Monash University.

The registry has collected information from over 90,000 patients who have undergone bariatric surgery and Ramsay is pleased to be support the registry.

How does participation in this Registry assist patients?

Participation in the registry enables Ramsay to track the outcomes of patients undergoing surgery in our hospitals. The registry has a primary aim of measuring quality and safety of bariatric procedures and using the data collected through this registry it provides the opportunity to:

  1. Confirm the outcomes from bariatric surgery at a community level
  2. Measure the change in diabetes status over time in this population
  3. Translate these efficacy and health outcomes into practice guidelines
  4. Utilise the Registry as a resource for future research projects 

What if I don’t want my information to be included in the Registry?

Any patient who is eligible for participation in the Bariatric Surgery registry will be notified by their surgeon and will be provided with a comprehensive information sheet prior to any surgery being performed. The information sheet will provide details of the registry, what data is collected and how it is used. If a patient does not wish to have their data contributed to the registry they are able to opt out using details provided in this information sheet.

The Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) Database commenced in 2001, initially collecting data on cardiac surgery performed in Victorian hospitals and expanding to a national program in 2007. This registry was established to provide a standardised system for data collection. The identification of key performance indicators and subsequent generation of local standards afforded the ability to benchmark Individual and unit performance across Australia and New Zealand. The Database is funded by the Victorian Department of Health, NSW Clinical Excellence Commission (CEC), Queensland Health and participating units.

The registry has captured over 150,000 surgeries and there are 41 participating sites around Australia. All of the Ramsay Health Care facilities that perform cardiac procedures contribute data to this registry.

How does participation in this Registry assist patients?

Participation in the registry enables Ramsay to track the outcomes of patients undergoing surgery in our hospitals. The registry aims to collect information on all adults having heart surgery in Australia and New Zealand and seeks to monitor and improve the results of cardiac surgery. Through the collection of data in this database, the steering group is able to monitor treatment and determine what procedures and techniques produce the best outcomes. This enables any doctors, nurses or hospitals that perform cardiac surgery to ensure that we achieve the best possible outcomes for patients.

How do Ramsay outcomes compare?

Cardiac

In 2018-19, 1,555 cardiac surgical procedures were reported to the ANZSCTS Database by Ramsay Health Care.

RAMR

The ANZSCTS Database uses an all procedures risk adjustment model. In 2018-19, all Ramsay Health Care units had risk-adjusted mortality rates that were lower than the predicted mortality (PM) rates. All eight units were within the 95% control limit (CL) on funnel plot analyses for risk-adjusted mortality rate (RAMR) amongst the Ramsay Health Care cohort. The average RAMR was 0.2% for Ramsay Health Care units and 0.9% for the national cohort.

RAMR

What if I don’t want my information to be included in the Registry?

Any patient who is eligible for participation in the ANZSCTS database will be notified by their surgeon and will be provided with a comprehensive information sheet prior to any surgery being performed. The information sheet will provide details of the registry, what data is collected and how it is used. If a patient does not wish to have their data contributed to the registry they are able to opt out using details provided in this information sheet.

The Australasian Rehabilitation Outcomes Centre (AROC) is the national registry for rehabilitation medicine in Australia and New Zealand. It is a joint initiative of the Australian rehabilitation sector and has been developed by care providers, funders, regulators and consumers. The registry commenced operations on 1 July 2002. With the support of its industry partners, AROC was established by the Australasian Faculty of Rehabilitation Medicine (AFRM) of the Royal Australasian College of Physicians (RACP).

How does participation in this Registry assist patients?

AROC delivers a national benchmarking system that can be used to improve rehabilitation outcomes in both the public and private sectors. The registry works with Ramsay on an annual basis to identify the outcomes within each facility. Outcomes are assessed by FIM score and length of stay and risk adjusted based on the types of patients admitted to our facilities.

AROC also works with Ramsay facilities to provide education, training and certification in FIM and other outcome measures and regularly provides advice to Ramsay facilities on how outcomes could be improved.

How do Ramsay outcomes compare?

The following graph demonstrates the performance of Ramsay Health Care Rehabilitation facilities based on the improvement in functional outcomes (FIM score) and length of stay.

Rehabilitation outcomes by facility

This figure covers the period of 1 Jan 2019 – 30 Dec 2019, the circles that are ringed in black represent a Ramsay facility.

We aim to have all of our facilities in the top two quadrants as this represents achievement of higher functional outcome. Ideally our facilities will achieve the optimal functional outcomes with minimal hospitalisation. Facilities that achieve this are represented in the top right hand quadrant and are coloured in green. Facilities that have lower than average functional outcomes and longer than average hospital stays are shown in red in the bottom left quadrant.

Ramsay does not have any facilities in this quadrant.

What if I don’t want my information to be included in the Registry?

All rehabilitation hospitals around Australia participate in AROC and are required to contribute data. If a patient does not wish to have information contributed to AROC they should speak to the hospital executive.

The National Joint Replacement Registry is an initiative of the Australian Orthopaedic Association (AO). The AOANJRR was established in 1999 and it seeks to improve and maintain the quality of care for individuals receiving joint replacement surgery. Information on hip, knee, shoulder, elbow, wrist, ankle and spinal disc replacement is collected from all hospitals in Australia undertaking joint replacement surgery.

The AOANJRR is one of the largest clinical quality registries in Australia with almost 1.5M joint replacements recorded by the end of 2018. In 2018 alone there were 122,500 procedures recorded.

How does participation in this Registry assist patients?

The AOANJRR is one of the few registries in Australia that has 100% participation, with all orthopaedic surgeons participating. The registry continually monitors the performance of prosthesis combinations and in the publicly available report publishes poor performing prosthesis on an annual basis. As a result, the registry has been effective at ensuring that prosthesis combinations are removed from the Australian market.

IN addition, the registry actively works with orthopaedic surgeons and facilities to ensure that surgeons and facilities are always supported in their effort to improve patient outcomes.

How do Ramsay outcomes compare?

The following graph demonstrates the performance of 16 Ramsay Health Care facilities who contribute data to the AOANJRR These graphs are based on a 5 year reporting period between 2013 - 2018.

Cumulative Percent Revision of Primary Total Conventional Hip Replacement by Hospital (All Diagnoses, Excluding Large Head (>32mm) Metal/Metal)

Cumulative Percent Revision of Primary Total Conventional Hip Replacement by Hospital

Cumulative Percent Revision of Primary Total Knee Replacement by Hospital (All Diagnoses)

Cumulative Percent Revision of Primary Total Knee Replacement by Hospital

Whilst all orthopaedic surgeons and Ramsay facilities contribute data to the registry, Ramsay will only obtain a facility report with the consent of the orthopaedic surgeons. Ramsay works actively with the AOANJRR to examine the facility data when it is provided to ensure that we can achieve optimal outcomes for patients.

What if I don’t want my information to be included in the Registry?

Any patient who is eligible for participation in the AOANJRR database will be advised by their orthopaedic surgeon and will receive a comprehensive information sheet. The information sheet will provide details of the registry, what data is collected and how it is used. If a patient does not wish to have their data contributed to the registry they are able to opt out using details provided in this information sheet.

The Australian and New Zealand Intensive Care Society (ANZICS) maintains a series of clinical registries that are designed to track outcomes from patients who are admitted into an intensive care unit. Ramsay Health Care participates in two of these registries – the first, the ANZICS Adult Patient Database collects outcomes for all patients admitted into an ICU around Australia. Ramsay Hospitals participate in the APD and routinely contributes information about ICU admissions to the registry. The second database if the ANZICS Critical Care Resource survey which is a database that tracks ICU capacity around Australia. The data for this registry is collected through an annual survey.

The ANZICS APD is one of the largest ICU related databases in the world with over 2 million patient episodes recorded. The database has been actively used for more than ten years to benchmark and track outcomes of patients who are admitted to ICU’s around Australia and has been instrumental in the improvement of patient outcomes in that period.

The ANZICS CCR was established in 1993 and data is currently collected from 80% of all ICUs around Australia. This database has been critical with management of resources in the COVD-19 epidemic.

How does participation in this Registry assist patients?

ANZICS APD seeks to monitor ICU performance and improve patient outcomes by working with the ICU community to improve the care of the critically ill. The registry routinely collects, analyses and publishes de-identified data from contributing ICUs and monitors the outcomes from the contributing units. Through regular publications and working with individual units when required, ANZICS continually ensures that patient outcomes are continually improving and held to a high standard.

How do Ramsay outcomes compare?

The following funnel plot demonstrates the performance of 13 Ramsay Health Care facilities who contribute data to the APD. Any facilities that are outside of the solid lines are outliers where outcomes are significantly different from other facilities. The Ramsay facilities are marked with red star and none are considered to be outliers.

The following funnel plot demonstrates the performance of 13 Ramsay Health Care facilities who contribute data to the APD.

The following graph demonstrates the efficiency of the ICU, by plotting the ANZROD Standardised Mortality Ratio against the Risk Adjusted Length of Stay. Ramsay facilities are marked with a red cross. Facilities that have an optimal length of stay and optimal mortality ratio will be clustered near the centre of the graph close to 1.

The following graph demonstrates the efficiency of the ICU, by plotting the ANZROD Standardised Mortality Ratio against the Risk Adjusted Length of Stay.

In the above, a hospital that has a Risk Adjusted Length of Stay of 0.5 means that the average length of stay in ICU is half the predicted length of stay.

What if I don’t want my information to be included in the Registry?

Any patient who is eligible for participation in the ANZICS database will be advised by the facility upon their admission to the ICU. For any patient who does not want their data contributed, please speak directly to one of the hospital executives.

Transcatheter Aortic Valve Implantation (TAVI) Registry

The Transcatheter Aortic Valve Implantation (TAVI) Registry is a clinical quality registry that monitors the clinical outcomes of patients undergoing aortic valve replacement via a transcatheter approach.

TAVI is an interventional procedure used for the treatment of aortic stenosis for patients that are deemed as high risk or inoperable under normal circumstances. Facilities and surgeons are credentialed to perform TAVI procedures in Australia and must follow the guidelines produced by the Australian & New Zealand Cardiac and Thoracic Surgeons (ANZSCTS) and the Cardiac Society of New Zealand.

Any facility that is accredited to perform TAVI procedures must contribute data to the Transcatheter Aortic Valve Implantation (TAVI) Registry. The registry seeks to improve patient care and outcomes following this procedure and ensure that facilities and surgeons meet accreditation requirements.

How does participation in this Registry assist patients?

Transcatheter Aortic Valve Implantation is a relatively new procedure in Australia. The TAVI registry was established in 2018 and it information relating to 2,462 cases has been contributed to the registry since inception.

As this is a new procedure in Australia monitoring of patient outcomes is critically important and ensures that any adverse outcomes at facilities are monitored and discussed amongst the multidisciplinary team that performs this procedure.

How do Ramsay outcomes compare?

The following two graphs represent the rate of adverse events in the Australian facilities performing this procedure.

The Ramsay facilities are numbered 4, 5, 24, 27, 38, 41 and 42. The period for this graph is the 1st of July 2019 – 30th of September 2019.

Peri-operative Adverse Events

In this graph the blue bar represents an adverse event before or during surgery, these adverse events are generally classified as cardiac, cerebral, vascular, bleeding or device related. PPM stands for Permanent Pacemaker – this is something that is typically required after a cardiac event.

The following graph relates to post-operative adverse events. The Ramsay facilities are numbered 4, 5, 24, 27, 38, 41 and 42. The period for this graph is the 1st of July 2019 – 30th of September 2019.

Post-operative Adverse Events

In this graph the blue bar represents an adverse event before or during surgery, these adverse events are generally classified as cardiac, cerebral, vascular, bleeding or device related. PPM stands for Permanent Pacemaker – this is something that is typically required after a cardiac event.

What if I don’t want my information to be included in the Registry?

As a hospital provider accredited to perform these procedures, Ramsay is required to participate in this registry and to contribute data as a part of being accredited. Any patient wishing to opt out of this clinical registry can do so. Information provided to patients by ACOR will provide details as to how a patient can opt out. To date, of the 2,462 cases contributed to the registry, 42 patients have opt-ed out of this critical data collection.

The Clinical Alliance and Research in ECT and Related Treatments (“CARE”) Network was established by Prof Colleen Loo and her team at University of NSW in 2015 with seed funding provided by the NSW Mental Health Commission (MHC), and ongoing support by state Chief Psychiatrists in Australia. The Network is based with University of New South Wales and seeks to address translational gaps and unwarranted clinical variation in practice.

The CARE Network is currently focused on ECT, with participating hospitals collecting key clinical data that is designed to assess patient outcomes and ensure that facilities are compliant with state based regulation. As of 2019, the network had 40 hospitals and the addition of Ramsay Health Care sites will expand the reach of the network to over 55 hospitals.

Four Ramsay sites commenced data collection in July 2020 and we anticipate other Ramsay sites will commence activities over the next 12 – 18 months.

How does participation in this Network assist patients?

ECT is a clinical intervention that can have significant benefit for patients. However, research has also demonstrated that if done incorrectly, the procedure can have a long term, detrimental effect on cognition. By participating in the CARE Network, Ramsay Sites are taking steps to ensure that our ECT services are compliant with state regulation. By actively collecting patient and clinical outcomes in this area, we will also be continuously reviewing services to ensure that the ECT service continues to delivery high quality outcomes that will benefit patient wellbeing.

What if I don’t want my information to be included in the Network?

All patients whose data may be contributed to this Network are provided with an Information Sheet that details the activities of the CARE Network and how their data may be utilised. Any information that is collected as a part of the CARE Network is de-identified and used for the purposes of assessing the quality of clinical services and overall outcomes for patients.

There is a possibility that the data collected could be used in Research projects. If a patient does not want their information used for research purposes, they are able to opt out following instructions provided in the information sheet.