The sharing and use of health data improves the quality of health care and saves lives. The AHRA Data Driven Healthcare Improvement strategy focuses on the secure and appropriate use of health data across three priorities:
Creation of Learning Health System Data Hubs that stimulate partnerships across academic, clinician and industry stakeholders
Integration of large data sets across the care continuum
Building workforce capacity in data use for healthcare improvement, through training of staff in AHRA partners including university undergraduates and graduates
National level activities include, amongst others: exploring the use of electronic medical record data to assess variations in patient care; increasing interoperability of datasets through the development of standardised terminology and mapping to a common data model; the recent release of freely available MOOCs in eHealth and data analytics; and the development of a pioneering agreement for the sharing of patient data for research.
Transformational Data Collaboration
MACH is leading the national Transformational Data Collaboration on behalf of AHRA to directly address the ‘integration of large data sets across the care continuum’ priority area.
What is the goal of the collaboration?
Australia has fragmented data holdings across all clinical domains, extending to terminologies, data models, and the quality assurance mechanisms employed. This collaboration will uplift the use of clinical data for research across Australia and engage national partners to support a consistent strategy in advancing Health Data Science.
What will the impact be?
This collaboration shall provide unique tools and resources to advance data use and re-use for research nationally, in-line with FAIR principles. Accelerating data integration will stimulate collaborative research and strengthen our ability to improve the health of Australians.
How will this be achieved?
The unique open and collaborative nature of AHRA will be harnessed to develop and progress this national data initiative in an inclusive and non-competitive environment.
Three foundational workstreams sit within the collaboration:
1. Data quality assessment (led by Dr Daniel Capurro, University of Melbourne)
The quality and applicability of routinely-collected health data for research has long been an issue. This project will develop practical mechanisms to enable standards-based assessment of data quality by researchers, facilitating informed use of appropriate datasets relevant to project requirements.
2. Terminologies and terminology mappings for research (led by David Bunker, Queensland Genomics and Brisbane Diamantina Health Partners)
Provision of an openly available CSIRO supported Ontoserver to work towards convergence in medical terminology mappings, and exploration of how to maximise the use and acceptance of the ADHA Clinical Terminology Service as a key national resource for research.
3. Use of common data models (led by A/Prof Nicole Pratt, University of South Australia)
Common data models and data standardisation are tools that permit collaborative research, large-scale data analytics and the sharing of tools, services and methodologies. Resources will be developed for researchers to support the uplift of data to the OHDSI OMOP Common Data Model, and a community of practice and education in the use of common data models established.
How far have we got?
The inaugural planning meeting of the collaboration was held in late October 2019 with a fantastic turnout of technical experts from organisations across the country. Productive discussions throughout the day led to defining of the initial workstream activities and nomination of workstream leads, and raised many points for the collaboration to consider as it progresses. The workstream leads are now working to refine and establish their projects, while MACH and the Collaboration Lead continue to build relationships with existing and potential stakeholders.
Who is involved?
The collaboration is led by A/Prof Dougie Boyle, University of Melbourne, on behalf of MACH. This work is in the early stages with ongoing conversations with national agencies including Department of Health, Australian Digital Health Agency, Australian Institute of Health and Welfare, CSIRO, Australian Research Data Commons, Digital Health CRC, and NPS Medicine Insight, and all of the Australian Advanced Health Research and Translation Centres and Centres for Innovation in Regional Health. This is an open, inclusive collaboration and we will be involving additional stakeholders as the work progresses.
How is the collaboration structured?
A sub-committee consisting of a Chair (A/Prof Dougie Boyle), MACH Project Officer, Project Manager, and Lead of each workstream reports to the AHRA Data Driven Healthcare Improvement (DDHCI) Committee. An Advisory Committee and the AHRA DDHCI Committee will advise the sub-committee as required.
Details can be found in the Terms of Reference and governance structure diagram.