The Pandemic Imperative: Clinical Data and Analytics Platform to improve clinical outcomes through point-of-care decision support
Flagship Program: Enabling Information Discovery and Application
There is a critical need for health systems to be able to utilise their digitised health data for improving patient care. This has been brought into especially sharp focus by the COVID-19 pandemic where treatment of patients is occurring in an information void, necessitating best guess decision-making by clinicians. Australia urgently needs a platform that:
- is a secure and nationally consistent repository of clinical, laboratory and imaging data for COVID-19 patients that is accessible by authorised users
- supports real-time analytics of the clinical data to inform best-evidence patient care;
- supports the implementation of adaptive clinical trials aimed at improving prevention, detection and treatment of COVID-19
- Long-term (includes patient-reported) longitudinal follow up of individuals infected with COVID-19
The Clinical Data and Analytics Platform (CDAP) will support the Australian response to the COVID-19 pandemic by creating a means to capture a broad range of clinical data and patient reported data spanning the entire patient journey, from diagnosis through management and into long term follow up. It will not duplicate existing activity such as the ANZICS REMAP CAP and SPRINT-SARI but will complement them by permitting rapid data linkage across these and other data sources such as pathology and radiology records. The platform will provide a means to enable a standardised dynamic consent front door for all of these activities and an overarching governance framework to manage access to the clinical data employing the highest data security standards to protect patient privacy and confidentiality. In this way it will enable rapid analysis of integrated data sets rather than analysis of individual data as is the case with the existing data registries. For instance, the ANZICS APD will only capture data on the 5% of patients who are admitted to ICU with COVID-19. CDAP will also utilise existing resources such as the International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC-WHO) COVID-19 Case Report Form, ensuring that all data is collected in a standardised format, but supports easy customisation of other fields deemed clinically relevant by clinical stakeholders. Finally, this platform will enable long term follow up of people diagnosed with COVID-19 for surveillance and management of their likely morbidities arising from infection and providing a means to better understand critical outcomes such as enduring immunity.
The Project will harness and adapt an existing suite of digital capabilities already in use within Australia. This rollout will be managed in close association with frontline clinicians who will do immediate User Acceptability Testing in real time. The rollout will deliver the platform immediately. Moreover, the platform can accommodate existing clinical trial capabilities that are well-suited to responding to health emergencies, in particular Bayesian adaptive trials (Bellgard, Snelling, McGree, 2019).
The Project team will liaise with existing State and Territory digital health initiatives and infrastructure to maximise efficiency. A close working relationship with the Australian Commission on Safety and Quality in HealthCare (ACSQHC) will also be established to provide national oversight to this activity and to support networking through State and Territory Public Health and Infectious Diseases surveillance.
This Project is a collaboration between QLD Health, NSW Health, Commonwealth Health, Queensland University of Technology, University of Sydney and Monash University aimed at making use of the resources that each has to benefit the health of the population.
The Project team leading this initiative have established a track record in developing registry and analytics platforms that are clinical trial ready. They have expertise in adaptive clinical trial design and in establishing appropriate governance frameworks around the use of health data. In addition, the team has developed and tested a dynamic consent capability and expertise in Bayesian network decision support. The team is also experienced in the implementation of decision support services into health care services.
Importantly, this Project clearly aligns with the Australian Commission on Safety and Quality in Health Care (ACSQHC) support for the development of means to deliver a learning health service. Health systems must be able to convert their health data into knowledge; that is, into information which is organised, analysed and actioned in a way that improves clinical care. In partnership with groups such as the Australian Clinical Trials Alliance (ACTA), ASCQHC have endorsed the identification of unwarranted variation in practice and ineffective and inefficient healthcare practices, and the undertaking of clinical trials based upon existing health service activity to both deliver key supporting data to inform best practice. Figure one illustrates this concept.
The specific objectives of this Project are:
- Rapidly deploy, using an adapted existing web-based Clinical Data and Analytics Platform (CDAP), a means to systematically capture diagnostic, treatment and outcome data on people diagnosed in community and/or presenting to hospitals with proven or suspected COVID-19 infection;
- Enhancements to functionality such as patient reported outcomes
- Automated data exchange with key sites
- To build in real-time clinical decision support through relevant (Bayesian network) analytic approaches;
- To support the rapid implementation of clinical trials to quickly and robustly determine which treatment strategies save lives and avoid serious morbidity in COVID-19 infection; and
- Facilitate long-term follow up of people diagnosed with COVID-19 for surveillance and management of their likely morbidities arising from infection and providing a means to better understand critical outcomes such as enduring immunity.