Tuesday 26 July, 12-1pm
Building an Indigenous Research program – lessons from the edge
Professor Alex Brown
National Centre for Indigenous Genomics, The Australian National University
Telethon Kids Institute
Professor Alex Brown is an Aboriginal medical doctor and researcher. He grew up on the south coast of New South Wales (NSW) with family connections to Nowra, Wreck Bay and Wallaga Lake on the far south coast of NSW.
Over the last 20 years, Alex has established an extensive and unique research program focused on chronic disease in vulnerable communities, with a particular focus on outlining and overcoming health disparities. He leads projects encompassing epidemiology, psychosocial determinants of chronic disease, mixed methods health services research in Aboriginal primary care and hospital settings, and randomised controlled trials of pharmacological and non-pharmacological chronic disease interventions.
Alex Brown has taken up a new appointment as Professor of Indigenous Genomics as part of a new strategic partnership between Perth's Telethon Kids Institute and The Australian National University (ANU).
Wednesday 27 July, 9-9.40am
How John Hopkins and other US health systems are using Epic to promote both clinical research and quality of care
Dr Daniel Ford
Director – John Hopkins Institute for Clinical and Translational Research; Vice Dean – Clinical Investigations
Dr Ford is a professor of medicine and psychiatry in the Johns Hopkins School of Medicine and a professor of epidemiology and health policy and management in the Johns Hopkins Bloomberg School of Public Health. As vice dean for clinical investigation, he leads one of the largest clinical research enterprises in the world, overseeing hundreds of millions of dollars in basic science inquiries. For nearly 20 years, Johns Hopkins has been the top recipient of biomedical research funding from the National Institutes of Health, much of it for clinical investigation.
Widely regarded as a pioneer in research associated with the interrelationships between mental disorders and chronic medical conditions, Dr. Ford gained international acclaim for clinical studies documenting depression as an independent risk factor for coronary heart disease and for research describing the long-term health risks related to sleep disturbances.
A leader in using the Internet for clinical research, Dr. Ford worked closely with Johns Hopkins personnel who developed e-IRB, an electronic process for submitting research proposals to the school of medicine’s Institutional Review Board, which oversees requests to launch clinical studies.
Thursday 28 July, 12-1pm
Advocating for change: Involving consumers in health and medical research
Executive Director, Health Care Consumers Association
Darlene has been involved in the consumer movement since the late 1990s. Darlene has been an active consumer representative at the local and national for over 20 years. She has been the Executive Director of Health Care Consumers’ Association Incorporated since 2008. She is a board member of the Capital Health Network and Meridian. She is also a member of the ACT Health and Wellbeing Partnership Board. Darlene has had a long-standing interest in improving the quality and safety of heath care and sees involving consumers in research, service design and governance as key to bringing about the change we want to see.
Abstract: Consumers are people who use health care services and have lived experience of a health condition or disease. This term includes patients, our friends, families, carers and members of the wider community.
As consumers we want to see changes to healthcare services, policies and practices so they meet consumer needs, preferences and values. We want to see research that looks to answer questions that matter to consumers, carers and our communities.
Consumer involvement in health and medical research means meaningful and authentic participation. This is more than involving consumers as participants or subjects. In research projects and programs consumer voices need to be heard equally with those of clinicians and researchers. This extends to a range of roles including as investigators and in the governance of projects and programs. This presentation will outline a range of approaches researchers can use to involve consumers.