Community views on the secondary use of general practice data: Findings from a mixed-methods study.

Introduction: General practice data, particularly when combined with hospital and other health service data through data linkage, are increasingly being used for quality assurance, evaluation, health service planning and research. In this study, we explored community views on sharing general practice data for secondary purposes, including research, to establish what concerns and conditions need to be addressed in the process of developing a social licence to support such use.

Methods: We used a mixed-methods approach with focus groups (November-December 2021), followed by a cross-sectional survey (March-April 2022).

Development and implementation of a national online application system for cross-jurisdictional linked data.

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.

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.

Sharing administrative health data with private industry: A report on two citizens' 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' juries were held in February 2020 in two locations close to Sydney, Australia.

Authorising the Release of Data without Consent for Health Research: The Role of Data Custodians and HRECs in Australia.

In Australia, access to administrative data for research without consent invokes a plethora of governance requirements. Whether these requirements are met is assessed by at least one human research ethics committee (HREC) and each of the custodians of the relevant data collections. In this article, we examined and compared the decision-making processes of data custodians and HRECs.

The role of data custodians in establishing and maintaining social licence for health research.

In this article we explore the role of data custodians in establishing and maintaining social licence for the use of personal information in health research. Personal information from population-level data collections can be used to make significant contributions to health and medical research, but this use is dependent on community acceptance or a social licence. We conducted semi-structured interviews with data custodians across Australia to better understand data custodians' views on their roles and responsibilities.

Maximising data value and avoiding data waste: a validation study in stroke research.

Objectives: To determine the feasibility of linking data from the Australian Stroke Clinical Registry (AuSCR), the National Death Index (NDI), and state-managed databases for hospital admissions and emergency presentations; to evaluate data completeness and concordance between datasets for common variables.

Design, Setting, Participants: Cohort design; probabilistic/deterministic data linkage of merged records for patients treated in hospital for stroke or transient ischaemic attack from New South Wales, Queensland, Victoria, and Western Australia.

Main Outcome Measures: Descriptive statistics for data matching success; concordance of demographic variables common to linked databases; sensitivity and specificity of AuSCR in-hospital death data for predicting NDI registrations.

Data Custodians and the Decision-making Process: Releasing Data for Research.

The empirical research presented in this article was prompted by concerns expressed by researchers about the decision-making processes of government data custodians. Data custodians are responsible for the collection, use and disclosure of vast collections of personal information, including the release of data from these collections for research. Researchers were concerned that the decision-making processes were time-consuming, complex and not transparent.

Recent trends in the use of linked data in Australia.

Objective The aim of this study was to quantify the use of linked data for health and human services research in Australia since the establishment of the Population Health Research Network (PHRN) in 2009. Methods A systematic literature search was performed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2009 checklist to search for all publications involving the use of Australian linked data between 2009-10 and 2016-17. Publications were categorised by subject, data linked and data linkage unit involved.

Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data.

Objective: To describe the challenges of obtaining state and nationally held data for linkage to a non-government national clinical registry.

Methods: We reviewed processes negotiated to achieve linkage between the Australian Stroke Clinical Registry (AuSCR), the National Death Index, and state held hospital data. Minutes from working group meetings, national workshop meetings, and documented communications with health department staff were reviewed and summarised.

Evaluation in health promotion: thoughts from inside a human research ethics committee.

Health promotion research, quality improvement and evaluation are all activities that raise ethical issues. In this paper, the Chair and a member of human resear ch ethics committees provide an insiders' point of view on how to demonstrate ethical conduct in health promotion research and quality improvement. Several common issues raised by health promotion research and evaluation are discussed including researcher integrity, conflicts of interest, use of information, consent and privacy.

An evaluation of a data linkage training workshop for research ethics committees.

Background: In Australia research projects proposing the use of linked data require approval by a Human Research Ethics Committee (HREC). A sound evaluation of the ethical issues involved requires understanding of the basic mechanics of data linkage, the associated benefits and risks, and the legal context in which it occurs. The rapidly increasing number of research projects utilising linked data in Australia has led to an urgent need for enhanced capacity of HRECs to review research applications involving this emerging research methodology.

Susceptibility of children to environmental pollutants.

Children are more vulnerable to adverse environmental exposures. The unique ways in which they interact with their environment and their dynamic developmental physiology mean that they generally receive a higher dose of toxicant for a given level of environmental exposure. In addition, children are frequently more likely to suffer adverse health outcomes from exposures.