Primary health care data development

National Primary Health Care Data Collection

Primary health care is a vital component of Australia’s health care system, is often the first point of contact individuals have with the health system and encompasses a broad range of professions and services. Despite this, there is limited data and information about how people use primary health care, the conditions managed, the health and wellbeing outcomes, and links between primary, tertiary (hospital) and other sectors such as disability and aged care. This makes it difficult to assess the positive impact of this sector on the health of Australians or to identify where improvements are needed.

The AIHW is leading the development of a Primary Health Care Information System. This System will encompass the governance, standards, infrastructure, collection, analysis and reporting of primary health care data within Australia.  The creation of a National Primary Health Care Data Collection (Data Collection) is one aspect of this program of work, and formerly referred to as the ‘Data Asset’. The vision for and value of the National Data Collection is that it will:

  • fill existing data and information gaps relating to primary care, and facilitate a better understanding of what happens to patients as they journey through the health system
  • be an accessible and value-added source of information for policy makers, researchers and the public, and support the evidence base underpinning research and policy, including primary health care reform
  • be enduring, robust, secure, protective of data integrity, and include coherent and relevant analytical and reporting outputs, underpinned by robust and transparent data governance and standards
  • enable data linkage, analysis and outcome reporting and be inclusive and reflective of the breadth of primary health care data and practice.

The initial scope of the Data Collection will be the collection, analysis and reporting of general practice activity data, with a view to develop and incorporate broader primary care data, including nursing and allied health, into the Data Collection as soon as practicable.

Importantly, the Data Collection will not duplicate existing data collection and reporting or compete with established governance arrangements. It will be built on existing frameworks and infrastructure, data sources and governance processes, and align with existing standards to ensure comparability.

​AIHW commenced the project with an extensive Consultation Phase (2018–20) and is currently in the Development Phase of the project.

Development Phase

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:

1.      Governance

2.      Standards

3.      Analytics

4.      Allied Health

5.      Communication.

2021-22 Work program

The AIHW has made considerable progress towards building the Data Collection and scoping the Information System and will continue this work in 2021-22.

The Governance stream will progress work on a primary health care data governance roadmap and framework, including projects relating to privacy and consent, Indigenous Data Governance and Indigenous Data Sovereignty in primary health care.

The Standards stream comprises development of the primary health care data model for the National Collection, as well as data quality, validation and interoperability, with consideration of clinical, statistical, policy and planning use cases.

The Analytics stream includes technical and analytical projects relating to data extraction, transfer, linkage and analysis, and aligns closely with the Governance and Standards streams.

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 Communications stream covers stakeholder engagement, messaging, publications and the website. This stream is an important addition to ensure transparency, clarity and accessibility of the work program.

Stakeholder engagement

In order to ensure the value and utility of the collection, AIHW has engaged in discussion and feedback across the breadth of the primary health care sector in relation to risks and opportunities in those focus areas of standards, governance, linkage, analysis and outcomes and the broader scope of primary care data. Ongoing close engagement with stakeholders from governments, Primary Health Networks (PHNs), general practice, allied health, professional bodies, research organisations, software vendors and consumers will ensure the value and utility of the data asset in the broader primary health-care information environment.

Governance

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’s 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.

For general information on how the AIHW complies with the AIHW Act 1987 and the Privacy Act 1988, the AIHW Governance Framework and other relevant guidelines and policies.

Decision making in relation to the Data Collection remains the responsibility of the AIHW however, three AIHW advisory committees (the Data Asset Steering Committee, 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 on AIHW Committees.

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. These will be made public as they are agreed.

Consultation Phase

In 2018–20, AIHW undertook a national consultation process seeking input into the scope and use of the National Primary Health Care Data Collection (then Asset), and laying the foundation for the Development Phase. This initial consultation phase included a series of consultation workshops in all state and territory capital cities and an online submission process, which concluded in the first half of 2019. The AIHW published a Consultation Report which summarised the feedback received during this process, identified the key issues raised and outlined the next steps in developing the Data Collection.

Developing a National Primary Health Care Data Asset: consultation report.

During this time, the AIHW also partnered with the Consumers Health Forum of Australia (CHF) to promote consumer awareness and confidence in the Data Collection. Two live webinar panels were run in late 2019, 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 Data Asset more broadly. The recorded webinars are available online – Our Data Our Health – Webinar October 2019 and Webinar November 2019.  

In late 2020, AIHW convened a discussion on a nationally coordinated approach to developing the Primary Health Care Data Collection in which its planned approach to the development of the Data Collection was introduced. Attendees included three AIHW advisory committees (Data Asset Steering Committee, Strategic Committee for National Health Information and the Primary Healthcare Advisory Committee), Commonwealth, state and territory health department representatives and invited guests.

In addition to the formal consultation process, the AIHW has continued to engage in active discussion with a broad range of stakeholders; including clinicians, PHNs, the National Aboriginal Community Controlled Health Organisation and its state based affiliates, vendors and extractors of practice management systems, peak bodies, and allied health researchers.

Contact information

AIHW Primary Health Care Data Development Unit

Phone: (02) 6244 1000; Email: [email protected]

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