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 information system and recognise the importance of establishing strong foundations to support the enduring nature of the Data Collection within that system.
This approach comprises five streams of interrelated work:
In 2022, the AIHW has made considerable progress towards building the Primary Health Care Data Collection and scoping the Primary Health Care Information System.
The Governance stream will progress work on a Primary Health Care Data Governance Roadmap and Framework, including projects relating to privacy and consent, and Indigenous Data Governance in primary health care.
Primary considerations of the Roadmap and Framework would include assurance, accountability, data quality and comprehensiveness, and community trust. The AIHW is developing an approach to privacy and consent, as a component of the Roadmap. A pilot project is in development, using privacy preserving record linkage (PPRL) to test privacy and consent, ultimately informing the Primary Health Care Data Governance Framework.
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 the 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 through 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 focussing on the development of standards to support the quality, consistency, interoperability and validation of primary health care data. This will involve:
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 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 manage the volume of potential data and data providers. Transparency in exposing and addressing technical and governance barriers (including privacy and consent), is an important step for the AIHW to progress the development of the Data Collection and Information System.
A general practice data linkage pilot study is in development, and is one example of multiple projects that will:
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 primary health care information system.
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, publications 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 undertake 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 will also routinely engage 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.
Our stakeholders >
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