Can and should we link data at a national level? Vaccine safety surveillance: A case study. This project provides many benefits for the community, exploring the legal and ethical issues around consent for data linkage, convening Citizens' Juries to weigh the evidence and make recommendations. It addresses National Research Priorities: Promoting and Maintaining Good Health and Safeguarding Australia as well as National Collaborative Research Infrastructure Strategy priorities. It uses vaccine sa ....Can and should we link data at a national level? Vaccine safety surveillance: A case study. This project provides many benefits for the community, exploring the legal and ethical issues around consent for data linkage, convening Citizens' Juries to weigh the evidence and make recommendations. It addresses National Research Priorities: Promoting and Maintaining Good Health and Safeguarding Australia as well as National Collaborative Research Infrastructure Strategy priorities. It uses vaccine safety surveillance as a case study to evaluate the effectiveness of data linkage (through linking Commonwealth immunisation data to state hospital data) and the methodologies and lessons learnt from cross jurisdictional data linkage can be transferred to other areas. Read moreRead less
When informed consent goes poorly: A descriptive study of health care complaints and medical negligence claims. To correct process failures effectively, one must understand them. This project will improve knowledge of problems and disputes that arise when patients are 'consented' for medical treatment -- an enterprise in which thousands of Australians, many at very vulnerable stages of their lives, are engaged daily. Study findings will advance understanding of breakdowns in the informed conse ....When informed consent goes poorly: A descriptive study of health care complaints and medical negligence claims. To correct process failures effectively, one must understand them. This project will improve knowledge of problems and disputes that arise when patients are 'consented' for medical treatment -- an enterprise in which thousands of Australians, many at very vulnerable stages of their lives, are engaged daily. Study findings will advance understanding of breakdowns in the informed consent process and help shape strategies for reducing them. Our partner organisations are extraordinarily well-placed to carry insights from this work to health professionals in the field, enhancing opportunities for real benefits to patients from the research. The project fits with the national research priority of promoting and maintaining good health.Read moreRead less
Citizens' juries: enabling effective influenza pandemic policy through engagement with the community. The project will provide information and practical guidance to assist with South Australian pandemic management specifically and will have implications for the state and national disaster planning generally. The project will provide resources for both state and national policy makers in the form of technical reports and comprehensive public health information modules appropriate for disseminatio ....Citizens' juries: enabling effective influenza pandemic policy through engagement with the community. The project will provide information and practical guidance to assist with South Australian pandemic management specifically and will have implications for the state and national disaster planning generally. The project will provide resources for both state and national policy makers in the form of technical reports and comprehensive public health information modules appropriate for dissemination to the wider Australian community. The project will contribute to increased community awareness of pandemic influenza and enhanced community acceptance of (and cooperation with) pandemic management plans while establishing a mechanism for future pandemic and disaster policy planning and evaluation.Read moreRead less
Discovery Early Career Researcher Award - Grant ID: DE120101710
Funder
Australian Research Council
Funding Amount
$375,000.00
Summary
Protecting equity and ethics in organ donation: patient, public and professional perspectives. This project will investigate patient, public and professional views on organ donation and preferences for consent systems regarding deceased organ donation in Australia, allocation of scarce organs, and protecting the health and safety of living organ donors. Recommendations to enhance equitable and ethical organ donation will be developed.
Framing Marginal Art: Developing an ethical, multi-dimensional framework for exhibiting art by people who experience mental illness and/or psychological trauma. This project develops an ethical, multi-dimensional framework for exhibiting creative works by people who experience mental illness and/or psychological trauma. Providing such a framework will enable these works to be exhibited ethically, which will serve the public interest by enhancing the contribution of creative programs to individua ....Framing Marginal Art: Developing an ethical, multi-dimensional framework for exhibiting art by people who experience mental illness and/or psychological trauma. This project develops an ethical, multi-dimensional framework for exhibiting creative works by people who experience mental illness and/or psychological trauma. Providing such a framework will enable these works to be exhibited ethically, which will serve the public interest by enhancing the contribution of creative programs to individual and social well-being. Furthermore, by educating the public about mental ill-health it lessens stigma and encourages those affected by illness to seek early, preventive treatment. This project, which leads to better understanding of illnesses that affect one-fifth of the population in their lifetime, will create better health outcomes for significant numbers of Australians.Read moreRead less
Manufacturing consensus: Independence in consensus statements in health. The project plans to conduct the first international systematic inquiry into the value, use and protection of public interest in consensus statements in health. Consensus statements based on scientific evidence are a useful platform to progress policy and practice in an environment of uncertainty. Consensus statements acknowledge both the importance of evidence but also the imperatives for action. However, there is concern ....Manufacturing consensus: Independence in consensus statements in health. The project plans to conduct the first international systematic inquiry into the value, use and protection of public interest in consensus statements in health. Consensus statements based on scientific evidence are a useful platform to progress policy and practice in an environment of uncertainty. Consensus statements acknowledge both the importance of evidence but also the imperatives for action. However, there is concern that they are inefficient, easily co-opted by interest groups and have changed the way the enterprise of science is perceived. The project aims to help inform future processes for improving the incorporation of evidence in policy and practice in a way that balances pragmatic, scientific and public concerns.Read moreRead less
Discovery Early Career Researcher Award - Grant ID: DE220101048
Funder
Australian Research Council
Funding Amount
$371,867.00
Summary
First Nations community-led approaches to Australian healthcare genomics. This project aims to develop community-led approaches that address key barriers to First Nations inclusion in Australian healthcare genomics. It will focus on working with communities to evaluate, co-design, and implement culturally appropriate engagement strategies and ethical research practices, including relationship-based consent; cultural integration of genomics; and ethical strategies for long-term management and use ....First Nations community-led approaches to Australian healthcare genomics. This project aims to develop community-led approaches that address key barriers to First Nations inclusion in Australian healthcare genomics. It will focus on working with communities to evaluate, co-design, and implement culturally appropriate engagement strategies and ethical research practices, including relationship-based consent; cultural integration of genomics; and ethical strategies for long-term management and use of biological samples and data for clinical and research purposes. Expected outcomes of this project are policy recommendations, contributions to national ethics and protocols guidelines, and the evaluation of educational materials and digital learning tools aimed at improving genomics literacy and research practices.
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