A National Digital Platform Privileging Time Honoured Indigenous Knowledge
Funder
National Health and Medical Research Council
Funding Amount
$35,000.00
Summary
Our vision is for a modern digital ‘National Network’ of sustainable research partnerships that benefit Aboriginal and Torres Strait Islander communities. Using the Uluru Statement framework for community dialogues, we will develop a governance framework that is 'fit for purpose' and which safeguards Indigenous people against the risks of research. A governance framework reflecting community priorities will lead to a culturally safe digital platform and a shared vision for Indigenous research.
Ethics And Equity: Developing Ethical Guidance For Health Policy And Systems Research In Developing Countries
Funder
National Health and Medical Research Council
Funding Amount
$374,706.00
Summary
Health policy and systems research (HPSR) in developing countries is vital to achieving the Millennium Development goals, but ethical guidance specific to this field has not been developed. This project will identify the ethical obligations of funders, research institutions, and researchers undertaking HPSR in developing countries and will describe strategies for how these obligations might be upheld in practice.
The Ethics And Politics Of Pharmaceutical Innovation And Translation
Funder
National Health and Medical Research Council
Funding Amount
$476,728.00
Summary
I lead a research program on the ethics and politics of pharmaceutical innovation and translation: how medicines are developed, regulated, funded and taken up into practice. I aim to help policymakers to deal with conflicts among stakeholders. Over the next 4 years I will conduct a suite of research projects on topics of immediate significance to Australian policymakers; develop a new framework for pharmaceutical ethics and create a “Pharmaceutical Ethics and Politics Network.”
Defining An Ethical And Evidence-based Approach To Clinical Research In Children And Adolescents With Chronic Kidney Disease (CKD)
Funder
National Health and Medical Research Council
Funding Amount
$84,800.00
Summary
Chronic kidney disease (CKD) in children and adolescents is a serious health condition, which impacts patients' academic abilities and achievement as well as their social wellbeing and their physical and mental health. This study will investigate the range of impacts that CKD has on patients and families, and explore the ways that these problems should best be addressed in future research from the perspective of patients and their families.
An integrated platform built on efficient informatics concepts already implemented in international research infrastructures for large-scale data management, providing access to federated databases/registries, biobank catalogues, harmonised - omics profiles, and bioinformatics tools. Patient data types will be linked via a unique identifier “RD-ID” developed jointly with the US NIH. RD-Connect is a primary enabler for IRDiRC funded research to improve treatment and management of rare diseases
Public Attitudes Towards Using Pharmaceuticals For Neuroenhancement.
Funder
National Health and Medical Research Council
Funding Amount
$343,888.00
Summary
Neuroenhancement is the use of pharmaceuticals and other substances by ñhealthyî people to improve their normal cognitive abilities - for example by improving their attention span, memory or mood. By conducting in-depth interviews with community members this project will explore understandings of, and attitudes towards, neuroenhancement among Australian adults. This information is essential to inform policies, and medical practice, in the use of pharmaceuticals for neuroenhancement purposes.
An Ethical Analysis Of The Disclosure Of Surgeons' Performance Data To Patients Within The Informed Consent Process
Funder
National Health and Medical Research Council
Funding Amount
$148,937.00
Summary
For over a decade, hospitals in the American state of New York have been collecting information about the mortality rates of surgeons conducting Coronary Artery Bypass Grafts, and making this information available to patients. The United Kingdom is set to make these and other performance indicators on the ability of surgeons ('report cards') available from 2004. There are good reasons to think a similar system may be introduced in Australia in the near future. Patients can use the information co ....For over a decade, hospitals in the American state of New York have been collecting information about the mortality rates of surgeons conducting Coronary Artery Bypass Grafts, and making this information available to patients. The United Kingdom is set to make these and other performance indicators on the ability of surgeons ('report cards') available from 2004. There are good reasons to think a similar system may be introduced in Australia in the near future. Patients can use the information contained in report cards when deciding whether or not to consent to have a particular surgeon conduct an operation on them. Contemporary bioethicists stress the importance of a proper informed consent process in medicine. This is a process in which a doctor advises a patient of relevant information and ensures that the patient comprehends that information, before the patient consents to an operation. Currently report cards in America are publicly disseminated on the internet, however there is no systematic attempt to incorporate the information contained in report cards into the informed consent process. We do not know if patients understand the information they are given, or if they incorporate it into their decision making procedures appropriately. In our study we will consider how information that is contained in report cards could best be used in the informed consent process. We will keep in mind the importance of helping patients to make their own informed decisions to consent to operations, the importance of respecting the professional integrity of surgeons and the importance of providing the best possible standard of care for patients. The result of our study will be a revised model of the informed consent process that incorporates report cards in an ethically acceptable way.Read moreRead less
Developing And Measuring Palliative Care Decision Making Skill
Funder
National Health and Medical Research Council
Funding Amount
$137,000.00
Summary
Relationships and communication skills that health professionals develop with patients are critical to patient involvement in decision making. This project will build on previous decision making research and the development of palliative care education for undergraduate students. The key components of successful decision making skills will be investigated and an education program and skill measures for undergraduate and postgraduate health professional students will be developed and pilot tested ....Relationships and communication skills that health professionals develop with patients are critical to patient involvement in decision making. This project will build on previous decision making research and the development of palliative care education for undergraduate students. The key components of successful decision making skills will be investigated and an education program and skill measures for undergraduate and postgraduate health professional students will be developed and pilot tested.Read moreRead less
Difficult Decisions: A Critical Analysis Of Consent To High-risk Medical Procedures
Funder
National Health and Medical Research Council
Funding Amount
$320,918.00
Summary
Consent is the cornerstone of ethics as applied to healthcare and is central to the relationship between healthcare and the law. Whilst no-one would deny the importance of seeking consent to high-risk medical procedures, much depends on the practical manner in which this is done. By studying consent for high-risk procedures with the participation of patients and their health care providers, we will both test the limits of consent and find practical ways to address those limits. In doing so, the ....Consent is the cornerstone of ethics as applied to healthcare and is central to the relationship between healthcare and the law. Whilst no-one would deny the importance of seeking consent to high-risk medical procedures, much depends on the practical manner in which this is done. By studying consent for high-risk procedures with the participation of patients and their health care providers, we will both test the limits of consent and find practical ways to address those limits. In doing so, the project will re-cast consent processes in a way that better accommodates the contingencies of clinical practice in high-risk settings in which patient autonomy is often compromised. Because this reformulation of consent will be grounded in the realities of high-risk clinical practice, our findings will reflect the needs and values of relevant stakeholders (patient and health professionals) and more likely to make a significant contribution to patient care and health policy. This project also addresses what the High Court of Australia has acknowledged as widespread weaknesses in the common formulation of consent in medicine. Finally this project, which operates in an important area of overlap between the law and medicine, will show how these disciplines can work jointly to serve the interests of all Australians, and Australian society.Read moreRead less