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BackgroundAustralia possesses valuable population health data, yet its potential for advancing medical product development remains largely untapped. Transformative growth in the use of linked data in clinical trials will support Australia's therapeutic development sector to be more responsive in the development of new therapeutics and the monitoring and surveillance of their safety and effectiveness.
MethodsWe conducted interviews with clinical trialists and data linkage experts to understand the current state and awareness of linked data within the clinical trials sector, identify existing pain points in the linkage process, and explore opportunities for improving visibility and access for the clinical trials sector. Researchers represented all stages of the medical product development pipeline and had a diverse range of experience with linked data.
ResultsInterviews revealed numerous barriers hindering the clinical trials sector from effectively using linked data, limiting its impact. Barriers included a lack of awareness, the complexity of the application and approval process, and lengthy delays in accessing data.
Participants readily recognised several ways that linkage of real-world data could be applied to their work in clinical trials, with pre-recruitment data, measurements of primary and secondary endpoints, and health economic analysis being the most consistently noted use cases.
ConclusionTo optimise the use of linked data to support clinical trials and medical product development in Australia, increased awareness among the therapeutic development sector regarding available real-world data and its potential is needed urgently. Lowering the barriers to accessing linked data will enhance health services and patient outcomes across Australia.

The Population Health Research Network (PHRN) is an Australian data linkage infrastructure capable of securely and safely linking and integrating data collections from a wide range of sources. It is an example of a national data linkage infrastructure in a country with a federated system of government. This population data centre profile describes Australia's unique approach to enabling access to linked data from single jurisdictions and from multiple jurisdictions. It covers the background to the establishment of the PHRN as well as information about how it operates today including operating models, governance, data, data linkage and data access. Some of the challenges of data linkage across jurisdictions are also discussed.

Australia has a rich history of utilising linked administrative data for health and human services research. The Population Health Research Network (PHRN), established in 2009, has developed national population-based data linkage capability and infrastructure. Australia-wide, specialist data linkage units have successfully linked their core population health data for over a decade, and within the network over 200 data collections are routinely linked. Data collections are typically classified as either routinely linked or linked on a project-by-project, ad hoc basis. Over time, linkage of data collections that were originally considered ad hoc, for example some longitudinal cohorts and clinical registries, has become 'routine'.
This paper reports on findings of a study that evaluated the volume and proportion of data linkage requests that have been facilitated through the PHRN over the past 5 years that include ad hoc linkage. The paper also reports on the type of data collections that have been linked on an ad hoc basis and details the type of research projects and fields of research currently supported via ad hoc linkage. Quantifying and characterising the type and most sought-after data collections for ad hoc linkage and the breadth of research being undertaken informs future planning and resource allocation for expanding the Australian national linkage capability. This paper explores the integration of ad hoc data linkage within the evolving landscape of expanded master linkage files and national linked data assets, responding to a growing range of data sources and research that could benefit from population-based data linkage.

ObjectiveResearch has found general but conditional support for health data being used for public benefit. The term "social licence" describes which uses of health data the public supports and under what conditions. Here, we aim to compare two approaches to understanding community attitudes towards health data use, and how social licence may differ, between Canadian and Australian populations.
ApproachFactors that affect community support for health data use include the specific population, the type(s) of data, and the engagement approach used. In Canada, facilitated dialogues were held to explore whether (i) there were uses of health data that diverse members of the public all supported and (ii) there was consensus on essential requirements for health data social licence.
In Australia, national surveys and citizens' juries were conducted to better understand (i) attitudes towards private sector data use and (ii) the ethical, legal and social implications of using general practice data in research.
ResultsDespite the different approaches taken, many conditions for social licence were similar across Canadian and Australian participants. Both groups agreed on conditions for health data social licence related to equity, governance, privacy and transparency. However, there was a stark contrast between levels of support for private sector data use, personal control and consent.
ConclusionThis comparative exercise contributes valuable insights into the ongoing dialogue surrounding community attitudes towards health data use. Continued research monitoring health data social licence across populations is imperative for public trust while gaining full benefits from health data use in research.

ObjectivesExisting decision-making practices and processes for sharing linked data for research are not keeping pace with the data tsunami and technological advances. The objectives of this project were to review existing approaches to decision making and to make recommendations for better decision-making practices and processes.
ApproachWe used a hypothetical research application to compare decision-making practices and processes for sharing linked health data for research in three jurisdictions, Western Australia, Manitoba and Scotland. to We considered the decision makers; the relevant law, policy, and guidelines; and the ethical review process to assess practice and process against metrics of good decision making - efficiency, transparency, accountability and community participation. An analysis of the similarities and differences identified common problems and challenges with existing decision-making processes. Recommendations on how to address these common problems were proposed.
ResultsThere were significant similarities in the decision-making processes in the three jurisdictions. These included:

formal application processes;
a statutory basis for decision making;
criteria for waiving consent including low risk, impracticality, necessity, and
protection of privacy and confidentiality; and
at least some community participation in decision making and research.

The main areas where decision making could be improved were:

Efficiency — the number of decision makers and duplication of the issues considered by different decision makers.
Separation of decision making on governance criteria and ethics criteria
Transparency and accountability
Community involvement

ConclusionThis project has identified several areas where decision-making about sharing linked data for research could be improved. Six internationally relevant recommendations for better decision-making were developed covering a range of issues from identifiability to community involvement.

IntroductionThe Population Health Research Network (PHRN) is an Australian data linkage infrastructure capable of securely and safely linking and integrating data collections from a wide range of sources. Australia, as a federated nation, has taken a national approach because:

Australia's population is mobile and there is significant cross border service use
Commonwealth, state and territory government agencies collect and store their own data.

The national data linkage infrastructure enables researchers to apply for access to routinely collected and linked administrative data from the Commonwealth, six states and two territories. The application and approvals has been described by researchers as a time-consuming and administratively burdensome process.
Objectives and ApproachThe primary objective of this project was to improve coordination of the application and approval processes for researchers requesting linked data from multiple jurisdictions in Australia. The approach taken was to develop a single application form/online application system (OAS) and standardise the business processes for multi-jurisdictional research applications.
ResultsThe PHRN OAS was launched in 2014. All jurisdictions agreed to use the system for multi-jurisdictional linked data projects and SA NT DataLink agreed to use the system for their single-jurisdictional projects.
Each year since the PHRN OAS's launch, both the total number of registered users and the number of submissions each year has increased. The majority oforganisations that lodge submissions are universities and medical research institutes.
There has been a significant reduction in the time taken by data linkage units to issue quotes and the time taken to achieve all approvals for multi-jurisdictional projects since the introduction of the standardised business processes.
Conclusion / ImplicationsThis paper demonstrates that despite the challenges and complexities associated with applying for linked data from multiple jurisdictions a coordinated application and approval approach can be achieved.

IntroductionAustralia is a federal, parliamentary, constitutional monarchy which consists of six states and two territories. As a result there is no single national data collection that follows individuals' interactions with health and human services from birth to death. Therefore researchers need access to linked data from multiple jurisdictions.
Objectives and ApproachThe objective of this project was to evaluate the progress of the PHRN in providing researchers access to linkage infrastructure for cross-jurisdictional and multi-jurisdictional projects.
Data from the PHRN Online Application System (OAS) was analysed to determine:

The number of applications for linked data received
The number of jurisdictions involved in each application
The number of applications involving researchers from multiple jurisdictions
The number of applications involving linkage of state and Commonwealth data

An analysis of peer reviewed publications resulting from the use of the infrastructure was also conducted.
ResultsAustralia has a unique distributed national data linkage system which enables linkage of data both within and between jurisdictions. Each jurisdiction (state/territory and Commonwealth) has a linkage unit which provides linkage services within that jurisdiction. For cross-jurisdictional linkage, depending on the design of the specific project, the linkage is conducted either by the national data linkage unit or a combination of the national linkage unit and the state/territory data linkage units.
Analysis of the data from the OAS shows an increase in the applications for cross-jurisdictional and multi-jurisdictional linked data. There is a mix of requests for only state/territory data and for state/territory/Commonwealth data. The number of national collaborations and publications has also increased.
Conclusion/ImplicationsCross-jurisdictional linkage is challenging in a federated country. There are many legislative, regulatory and policy barriers. Despite these challenges, Australia has developed a national system enabling researchers to apply through a central system and for jurisdictions to work together to link and provide access to cross-jurisdictional and multi-jurisdictional data.

ABSTRACTObjectivesIn 2009 Australian governments and academic institutions made a substantial investment to establish the Population Health Research Network (PHRN), a distributed research infrastructure network which provides Australian researchers with state-of-the-art data linkage facilities and services. The infrastructure operates on a collaborative, national, non-exclusive basis and enables Australian researchers to address key national and global challenges.
We have conducted a review of the PHRN's progress over the last 6 years in achieving its objectives of:1. increasing the data linkage research capacity in Australia2. enabling research in national priority areas.
ApproachProgress with achieving the first objective was measured by comparing the data linkage facilities and services available in Australia in 2008-09 with those available in 2014-15. The following categories of services and facilities were used in the analysis:

Linkage facilities
Application, access and storage facilities
Information, training and education

Changes in usage of the data linkage infrastructure over the period 2008-09 to 2014-15 were measured.
The second objective was achieved by using bibliometrics to assess academic impact, in the form of citations, of peer-reviewed publications which arose from use of the PHRN infrastructure. The topics of all of the publications were compared to health priority areas to determine the extent to which the infrastructure has been used to inform national priorities.
ResultsThere has been a significant expansion of the data linkage facilities from a small number of jurisdictional data linkage units to a distributed network of data linkage units servicing researchers in every state and territory. A cross-jurisdictional data linkage capability has also been established as well as a national online data application system, a secure remote access laboratory and a secure file transfer system. A variety of information, training and education has been provided to stakeholders. The expansion of the facilities and services has seen usage of data linkage units triple since 2011-12.
The number of peer-reviewed publications resulting from the use of the PHRN infrastructure has increased every year since 2011-12. There were 111 publications in 2014-15. Areas of high burden of disease in Australia, cancer, cardiovascular and endocrine diseases are highly represented in the publications.
ConclusionThere has been a significant increase in data linkage research infrastructure in Australia from 2008-09 to 2014-15. This has resulted in an increase in both the number of research projects conducted using linked data and the number of related peer-reviewed publications.

BackgroundMetadata plays a crucial role in the health research infrastructure ecosystem. Despite the abundance of metadata for data collections in Australia, there is no simple way for researchers to search for standardised metadata about linked and linkable data collections across sectors or jurisdictions, making it an arduous and time-intensive task.
MethodsThe project comprised three phases: an initial scoping exercise to understand the current state of metadata and best practice; a national consultation involving researchers data linkage staff and data custodians to develop a high-fidelity prototype; and a final build and implementation phase. The platform underwent several prototyping and testing cycles to refine the digital experience.
ResultsKey expert interviews confirmed that there is a wealth of metadata available in Australia, but it is difficult for researchers to access and evaluate. Consultations with researchers identified opportunities to standardise metadata and provide a centralised platform to enhance the discoverability of linkable data collections for research. High value platform features included searching, browsing and filtering capabilities, variable list metadata, standardised formats, sample data, and frequently asked questions. The final design and functionality reflected user consultations and data custodian input on feasibility and resulted in the standardisation of metadata for linked data collections across sectors and jurisdictions.
ConclusionThe Population Health Research Network developed and implemented a metadata platform to enable researchers to assess and evaluate the suitability of data collections for data linkage projects more readily. Improved metadata accessibility will save time and enhance the quality of linked data applications.

ObjectivesAccess to cross-jurisdictional data can be beneficial to researchers but challenges exist in accessing data from different legal jurisdictions and policy environments. Two national networks in Australia and Canada will share their respective approaches to supporting the discovery of, and coordinating applications and approvals for, cross-jurisdictional data access.
ApproachCollaboration between these two networks in the last year have allowed members to gain a better understanding of the approaches that have been put in place to support the coordination of cross-jurisdictional data applications. Through regular inter-network discussion and joint workshops, we have gained insight into the similarities, differences and challenges faced by each and identified common goals for continued shared learnings.
ResultsSimilarities and differences exist between the approach and processes each network has implemented to coordinate applications for cross-jurisdictional data. In both countries, a single point of contact model has been key in coordinating data requests centrally. Whereas in one country, virtual access to linked data is provided centrally, different legal and policy environments across jurisdictions in another country are barriers to accessing data in one location. Each network has developed processes and tools to meet researcher needs while respecting local requirements and are turning to innovative strategies. For example, one network is developing infrastructure to support analysis of data in a distributed way, and both groups are creating centralized tools to streamline the data discovery and access processes to improve researcher experience.
ConclusionThe coordination of applications for cross-jurisdictional data access by two national networks has streamlined researcher access, but challenges exist to fully meet researcher needs for cross-jurisdictional analyses. The continued cross-network collaboration will allow for shared learning opportunities and development of innovative solutions to tackle challenges related to cross-jurisdictional data access.

Introduction"The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research", recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom.
Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work:

Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research
Annette Braunack-Mayer/Felicity Flack: Surveys and citizens' juries: Sharing government data with private industry
Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data
Alison Paprica: Plain language communication informed by Health Data Research Network Canada's Public Advisory Council.

Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as "What is the most important thing for meaningful public engagement?" to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience.
ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion.
Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.

ObjectivesThis paper describes a Population Health Research Network project establishing the NMLK as a national linkage system utilising an enduring linkage between national and jurisdictional linkage spines. It used keys from existing enduring linkages within each participating jurisdictional Data Linkage Unit (DLU). The process is demonstrated with reference to an enduring map between AIHW Health Linkage Spine (HLS) and Centre for Health Record Linkage (CHeReL) MLK.
ApproachThe NMLK has jurisdictional sections. The NSW section was established in four steps.

CHeReL provided data from its regularly updated MLK for the NMLK project authorised by existing project ethics approval.
AIHW linked NSW MLK subset to HLS and the de-identified linkage map and report were sent to CHeReL for review.
CHeReL reviewed the results, particularly the additional duplicates identified through the linkage process. The agreed links form the AIHW-NSW section of NMLK quarantined for a year.
The annual update, scheduled for later in 2024, will focus only on linking the new and unlinked individuals in both datasets.

ResultsThe NSW cohort was supplied with almost 50 million records, comprising over 14 million unique person ids. Of these, 12 million were matched with reasonable confidence to HLS, or 84.4% of the total (or around 97% if we exclude NSW records with missing personal information and around 140,000 individuals out of scope of HLS.)
Conclusion Establishment of the NMLK enabled effective production of high-quality enduring linkage maps used across multiple cross-jurisdictional projects while minimising the privacy risks.

ObjectiveIn the rapidly evolving landscape of digital health, data sharing using primary health care records has gained prominence. Linking primary care data with other administrative health datasets has the potential to provide a whole-of-life perspective on the patient journey and improve health outcomes. This study aimed to gain insight into Australian General Practitioners' (GPs) perspectives on the use of general practice health records for research and data linkage.
ApproachThe study employed a mixed-methods approach. We conducted semi-structured interviews with GPs who had little experience of data sharing, focusing on understanding the challenges and opportunities that increased data sharing poses. We also conducted a three-round modified Delphi study with GPs with experience of and interest in research and data sharing to refine recommendations for data sharing using general practice data.
ResultsIn this paper we describe the findings from both arms of the study and compare their recommendations to contribute to a nuanced understanding of general practitioners' views on data linkage and sharing in general practice.
Conclusions and ImplicationsBridging the knowledge gap between novices and expert practitioners, the findings will inform policies, practices, and initiatives to address the ethical, legal and social implications of data sharing in general practice settings in Australia.

The Population Health Research Network (PHRN) is an Australian national data linkage infrastructure that links a wide range of health and human services data in privacy-preserving ways. The data linkage infrastructure enables researchers to apply for access to routinely collected, linked, administrative data from the six states and two territories which make up the Commonwealth of Australia, as well as data collected by the Australian Government. The PHRN is a distributed network where data is collected and managed at the respective jurisdictional and/or cross-jurisdictional levels. As a result, access to linked data from multiple jurisdictions requires complex approval processes. This paper describes Australia's approach to enabling access to linked data from multiple jurisdictions. It covers the identification of, and agreement to, a minimum set of data items to be included in a unified national application form, the development and implementation of a national online application system and the harmonisation of business processes for cross-jurisdictional research projects. Utilisation of the online application system and the ongoing challenges of data linkage across jurisdictions are discussed. Changes to the data custodian and ethics committee approval criteria were out of scope for this project.

The Population Health Research Network (PHRN) is an Australian national data linkage infrastructure that links a wide range of health and human services data in privacy-preserving ways. The data linkage infrastructure enables researchers to apply for access to routinely collected, linked, administrative data from the six states and two territories which make up the Commonwealth of Australia, as well as data collected by the Australian Government. The PHRN is a distributed network where data is collected and managed at the respective jurisdictional and/or cross-jurisdictional levels. As a result, access to linked data from multiple jurisdictions requires complex approval processes. This paper describes Australia's approach to enabling access to linked data from multiple jurisdictions. It covers the identification of, and agreement to, a minimum set of data items to be included in a unified national application form, the development and implementation of a national online application system and the harmonisation of business processes for cross-jurisdictional research projects. Utilisation of the online application system and the ongoing challenges of data linkage across jurisdictions are discussed. Changes to the data custodian and ethics committee approval criteria were out of scope for this project.