The Population Health Research Network - Population Data Centre Profile

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

Contributions and perspectives of Indigenous Peoples to the study of mercury in the Arctic

Arctic Indigenous Peoples are among the most exposed humans when it comes to foodborne mercury (Hg). In response, Hg monitoring and research have been on-going in the circumpolar Arctic since about 1991; this work has been mainly possible through the involvement of Arctic Indigenous Peoples. The present overview was initially conducted in the context of a broader assessment of Hg research organized by the Arctic Monitoring and Assessment Programme. This article provides examples of Indigenous Peoples' contributions to Hg monitoring and research in the Arctic, and discusses approaches that could be used, and improved upon, when carrying out future activities. Over 40 mercury projects conducted with/by Indigenous Peoples are identified for different circumpolar regions including the U.S., Canada, Greenland, Sweden, Finland, and Russia as well as instances where Indigenous Knowledge contributed to the understanding of Hg contamination in the Arctic. Perspectives and visions of future Hg research as well as recommendations are presented. The establishment of collaborative processes and partnership/co-production approaches with scientists and Indigenous Peoples, using good communication practices and transparency in research activities, are key to the success of research and monitoring activities in the Arctic. Sustainable funding for community-driven monitoring and research programs in Arctic countries would be beneficial and assist in developing more research/ monitoring capacity and would promote a more holistic approach to understanding Hg in the Arctic. These activities should be well connected to circumpolar/international initiatives to ensure broader availability of the information and uptake in policy development

Data Linkage in Australia: The First 50 Years

Population-based data linkage has a long history in Australia from its beginnings in Western Australia in the 1970s to the coordinated national data linkage infrastructure that exists today. This article describes the journey from an idea to a national data linkage network which has impacts on the health and well-being of Australians from preventing developmental anomalies to responding to the COVID-19 pandemic. Many enthusiastic and dedicated people have contributed to Australia’s data linkage capability over the last 50 years. They have managed to overcome a number of challenges including gaining stakeholder and community support; navigating complex legal and ethical environments; establishing cross-jurisdictional collaborations, and gaining ongoing financial support. The future is bright for linked data in Australia as the infrastructure built over the last 50 years provides a firm foundation for further expansion and development, ensuring that Australia’s linked health and human services data continues to be available to address the evolving challenges of the next half century

The impact of the Population Health Research Network on linked data research capacity in Australia

ABSTRACT Objectives In 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 Australia 2. enabling research in national priority areas. Approach Progress 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. Results There 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. Conclusion There 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

Estimating the Cost of Complications of Diabetes in Australia Using Administrative Health-Care Data

Objectives: To estimate Australian health-care costs in the year of first occurrence and subsequent years for major diabetes-related complications using administrative health-care data. Methods: The costs were estimated using administrative information on hospital services and primary health-care services financed through Australia's national health insurance system Medicare. Data were available for 70,340 patients with diabetes in Western Australia (mean duration of 4.5 years of follow-up). Multiple regression analysis was used to estimate inpatient and primary care costs. Results: For a man aged 60 years, the average costs in the year the event first occurred were: amputation $20,416 (95$11,660 (10,931-12,450); nonfatal stroke $14,012 (12,849-15,183); ischaemic heart disease$12,577 (12,026-13,123); heart failure $15,530 (13,965-17,009); renal failure$28,661 (22,989-34,202); and chronic leg ulcer $15,413 (13,089-18,123). The costs in subsequent years for a man aged 60 years range from 14% for nonfatal MI to 106% for renal failure, of event costs. Conclusions: Estimates of the health-care costs associated with diabetes-related complications can be used in modeling the long-term costs of diabetes and in evaluating the cost-effectiveness of improving care

Sharing administrative health data with private industry: A report on two citizens\u27 juries

Background: There is good evidence of both community support for sharing public sector administrative health data in the public interest and concern about data security, misuse and loss of control over health information, particularly if private sector organizations are the data recipients. To date, there is little research describing the perspectives of informed community members on private sector use of public health data and, particularly, on the conditions under which that use might be justified. Methods: Two citizens\u27 juries were held in February 2020 in two locations close to Sydney, Australia. Jurors considered the charge: ‘Under what circumstances is it permissible for governments to share health data with private industry for research and development?’. Results: All jurors, bar one, in principle supported sharing government administrative health data with private industry for research and development. The support was conditional and the juries\u27 recommendations specifying these conditions related closely to the concerns they identified in deliberation. Conclusion: The outcomes of the deliberative processes suggest that informed Australian citizens are willing to accept sharing their administrative health data, including with private industry, providing the intended purpose is clearly of public benefit, sharing occurs responsibly in a framework of accountability, and the data are securely held. Patient and Public Contribution: The design of the jury was guided by an Advisory Group including representatives from a health consumer organization. The jurors themselves were selected to be descriptively representative of their communities and with independent facilitation wrote the recommendations