In 2020-21, the AIHW developed an approach to the development of the Data Collection that would build on existing and emerging infrastructure, governance models and collaborations, address the complexity of the primary health care data environment and to recognise the importance of establishing strong foundations to support the enduring nature of the Data Collection within that environment.
This approach comprises five streams of interrelated work:
In 2022, the AIHW has made considerable progress towards building the Primary Health Care Data Collection.
The Governance stream is progressing work on a Primary Health Care Data Governance Roadmap and Framework, including projects relating to privacy, consent, and Indigenous Data Governance.
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 Data Collection 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 Data Collection, 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 Data Collection, particularly in relation to specific data custodianship requirements including data access and release.
The Standards stream comprises development of the primary health care data model for the Data Collection, as well as data quality, validation and interoperability, with consideration of clinical, statistical, policy and planning use cases.
A significant barrier to the availability of quality, comprehensive data from Australia’s primary health care sector is 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.
This stream of work is focusing on the development of standards to support the quality, consistency, interoperability and validation of primary health care data. This involves:
The Analytics stream includes technical and analytical projects relating to data extraction, transfer, collation, linkage and analysis, and aligns closely with the Governance and Standards streams. This work stream also involves consultation and requirements gathering for future reporting products of the Data Collection.
The AIHW aims to create an enduring, robust, secure, accessible and value-added source of primary health care information. This stream of work will fill existing data and information gaps relating to primary care, enable data linkage, analysis and outcome reporting and be protective of data integrity, patient and provider privacy. All work in this stream is underpinned by robust and transparent data governance and standards.
Collating consistent and comparable data in the primary health care sector is a substantial task and developing mechanisms to do so is essential to managing the volume of potential data and data providers. Transparency in addressing technical and governance barriers (including privacy and consent), is crucial to the AIHW’s progress in the development of the Data Collection.
The Allied Health stream provides important continuity and focus to progress data capacity and capability projects and ensure visibility of allied health data as a critical part of the Data Collection.
The AIHW are progressing development of a set of common, core data items that can be scalable at the national level and rolled out across allied health professions for the purpose of national level data analytics and reporting.
The AIHW undertook a physiotherapy data capacity and capability project to identify data fields that could be extracted from information systems. A potential set of core data items was developed and tested with a small group of physiotherapists. Evaluation of responses showed that insufficient information is currently captured to progress to the next stages of the physiotherapy project at this time.
AIHW will progress the Allied health work stream by refining the project protocol piloted in physiotherapy and rolling it out to the breadth of the allied health sector, inclusive of registered and self-regulated professions. This work will be undertaken in consultation with the Office of the Chief Allied Health Officer (Commonwealth Department of Health) and the Australian Digital Health Agency, to ensure our project complements current and planned work.
Information from this work stream will contribute to the development of the primary health care data model, inclusive of allied health specific extensions, as part of the Standards and interoperability work stream.
The communications stream covers stakeholder engagement, messaging and publications about development of the Data Collection, and primary health care-related content on the AIHW website. This stream is an important addition to ensure transparency, clarity and accessibility of the AIHW primary health care work program.
The AIHW is committed to maintaining community trust through management and use of data and to undertaking work in ways that guard that trust. The AIHW will implement the following strategies in relation to the primary health care work program:
The AIHW routinely engages with primary health care experts across various areas to ensure adequate breadth and scope of work. Decision-making in relation to the Data Collection remains the responsibility of the AIHW; however, three AIHW advisory committees (the Primary Health Care Data Development Expert Advisory Group, the Primary Healthcare Advisory Committee and the Strategic Committee for National Health Information) will all provide strategic, technical and sector-specific advice and input to the development of the Data Collection.
For more information, see AIHW committees and Our stakeholders section.
Primary Health Insights (PHI) is a storage and analytics platform that hosts de-identified general practice data and other primary health data for most of the Primary Health Networks (PHNs) across Australia. It brings together industry leading data security, rigorous data governance and privacy, advanced analytics, and primary health informatics expertise from PHNs to improve population health outcomes for all Australians.
The AIHW has reached an agreement to join PHI as a ‘non-member partner’. This agreement provides AIHW with access to the platform’s services and, as the sole participant representative of the national jurisdiction, a role in the governance committees that oversee the platform and how data is used on it.
AIHW’s use of PHI builds on existing Commonwealth-funded and supported primary health care data infrastructure and avoids expenditure on the duplication of existing capabilities. Joining PHI will further AIHW’s primary care data development activities, by providing a ready built platform for collating, storing, analysing, and managing appropriate access to data in the Primary Health Care Data Collection (PHCDC). AIHW’s participation in PHI creates an environment in which PHNs and AIHW can negotiate, enter into and operate appropriate data sharing agreements, working towards establishing appropriate data sources for the PHCDC.
Our stakeholders >
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