Work program summary
The AIHW’s primary health care data development activities have a focus on general practice data due to the existing digital maturity and investment in this field, with plans for expansion in future. The National Primary Health Care Data Collection (NPHCDC) is being designed for scalability and aims to collect broader primary health care data, including nursing and allied health, as the data collection evolves. The AIHW is committed to developing and advancing data capacity and capability projects, ensuring that allied health data remains a key component of the NPHCDC.
As part of this effort, the AIHW conducted a data capacity and capability project for physiotherapy, which involved identifying data fields that could be extracted from existing information systems. While a potential set of core data items was developed and tested with a small group of physiotherapists, the evaluation indicated that insufficient information is currently being captured to move forward with the physiotherapy project at this time.
At present, the AIHW is focused on conducting small-scale data demonstration projects with the goal of generating a comprehensive overview of the current state of general practice data in Australia. By engaging in this type of proof-of-concept work, the AIHW seeks to identify opportunities to collaborate, influence and lead demonstration projects that will:
- demonstrate the utility of primary health care data to fill known information gaps, in a national or multi-jurisdictional context
- provide insights into primary health care data ingestion, transformation, linkage and analysis to inform the approach to the Data Collection
- build stakeholder relationships and community trust in the AIHW’s primary health care data development work program
- identify and address technical and governance barriers along the way.
For enquiries about primary health care data development activities at the AIHW please contact [email protected]
The current work program for the AIHW is being conducted in collaboration with various stakeholders and is contributing to the assessment of governance models, data standards, and system infrastructure, ultimately informing the development of a comprehensive NPHCDC.
General practice data demonstration project: Dementia
The AIHW is undertaking a data demonstration project in 2023 with the aim of establishing collaborative processes with PHNs. The project utilises the Primary Health Insights (PHI) platform for data storage and analysis and focuses on a small subset of general practice data (specifically relating to dementia). With oversight from the PHN National Data Governance Committee (NDGC), this proof-of-concept work will strengthen capacity and capability in data governance, standards, analytics and collaboration while giving the AIHW the opportunity to evaluate the PHI platform’s suitability as a host infrastructure for the NPHCDC.
PHI has coverage of most of the 31 PHNS and its own governance framework. The AIHW’s participation in PHI creates an environment in which PHNs and the AIHW can negotiate, enter into and operate appropriate data sharing agreements, working towards establishing appropriate data sources for the NPHCDC.
The aim of this project is to demonstrate how general practice data can contribute to an understanding of dementia prevalence. Dementia is most commonly diagnosed, treated and managed in the community. A lack of national data on the diagnosis and management of dementia by primary and secondary care providers (in particular, data from GPs and specialists such as geriatricians) is the single biggest data gap affecting our understanding of dementia in Australia which makes it an informative topic for the first demonstration project.
For more information on existing data gaps for dementia and future possibilities for filling in these gaps refer to the AIHW reports: Dementia data gaps and opportunities and Australia’s Health 2020 data insights.
Key considerations for the project include:
- coordination of efforts with other agencies and alignment with multiple entities (including PHNs and jurisdictions) working on similar activities
- ensuring data availability through data sharing arrangements and consistent data collection to ensure optimal levels of interoperability
- developing an efficient data model optimises data use: collect once, use often
- exploration of consent models for the NPHCDC that are appropriate for primary and secondary uses, supporting data linkage and utility, and are considered appropriate by consumers
- exploring current avenues for giving and withdrawing consent relating to patient data.
The technical lessons learnt from ingesting, storing, analysing, and managing PHN GP data on PHI are intended to inform future activities related to hosting the NPHCDC.
Primary health care data governance
The AIHW is progressing a Primary Health Care Data Governance Roadmap and Framework. Primary considerations of the Roadmap and Framework include assurance, accountability, data quality, data comprehensiveness, and community trust. As an information agency, the AIHW relies upon strong data governance to perform its functions effectively and maintain a trusted reputation amongst its many data suppliers, data users and other stakeholders. A comprehensive and transparent approach to data governance is crucial for progressing development of a NPHCDC that is enduring, robust, secure and protective of data integrity.
The AIHW Data Governance Framework, and the legal, regulatory and governance environment in which the AIHW operates form the basis of the sound management of the NPHCDC, ensuring that Australia’s primary health care data is managed, used and protected in line with legal and community expectations. The governance arrangements will be reviewed throughout the development of the NPHCDC, particularly in relation to specific data custodianship requirements including data access and data sharing arrangements.
Development of data standards
A lack of nationally agreed and implemented standards throughout the data lifecycle, including the capture of clinical information and export of patient records for statistical analysis is a significant barrier to the availability of quality, comprehensive data from Australia’s primary health care sector. The AIHW is actively engaging with key stakeholders to align standards that support the quality, consistency, interoperability and validation of primary health care data, including the AIHW’s own Metadata, Information Management & Classifications Unit who manage METEOR – an online registry for Australian metadata standards for statistics and information. This involves the development of recommendations for the use of standards within the NPHCDC, including data definitions and use of terminologies and assessment of data quality across the primary health care sector and development of data quality validation rules.
Indigenous Data Governance & Indigenous Data Sovereignty
The AIHW are currently exploring Indigenous Data Governance principles and the implications on the development of the NPHCDC. This includes thorough research into the governance and use of primary health care data relating to Aboriginal and Torres Strait Islander people in the Primary Health Insights (PHI) platform. This work will intersect, inform and be informed by other work at the AIHW, led by the Indigenous Group, to ensure effective implementation of Indigenous Data Governance in relation to primary health care data.
Given the diversity of the Indigenous-specific primary health care sector in terms of governance, client population and location by geography, the AIHW acknowledges the importance of inclusion and Indigenous engagement to ensure the breadth and diversity and data needs of the Indigenous-specific primary health care sector is adequately covered.
The AIHW is working closely with PHNs through a collaborative working group to promote and improve Indigenous Data Sovereignty (IDS) and Indigenous Data Governance (IDG) understanding and practices. The primary objective of this working group is to generate recommendations for principles and best practices in IDS and IDG as it relates to PHN operations and initiatives. It is envisaged this will have broader implication on the primary health care sector through the creation of resources informing optimal collection, access and use of Indigenous data for Indigenous community empowerment and sovereignty.
Consultation and stakeholder engagement
The AIHW commenced primary health care data development activities with an extensive consultation phase. This initial phase included a series of consultation workshops in all state and territory capital cities and an online submission process. The AIHW published a Consultation Report (PDF 930kB) in 2019 which summarised the feedback received during this process, identified the key issues raised and outlined the next steps in developing the NPHCDC.
During this time, the AIHW also partnered with the Consumers Health Forum of Australia (CHF) to promote consumer awareness and confidence in the NPHCDC. Two live webinar panels were conducted as a means of gauging consumer knowledge, attitudes, and concerns about key issues such as privacy and consent and the development and benefits of the NPHCDC more broadly. The recorded webinars are available online – Our Data Our Health – Webinar October 2019 and Webinar November 2019.
In addition to the formal consultation processes, the AIHW has continued to engage in active discussion with a broad range of stakeholders; including clinicians, Primary Health Networks (PHNs), vendors and extractors of practice management systems, peak bodies, and allied health researchers.