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Targeted Call for Research - public call for research priorities in Aboriginal and Torres Strait Islander health

Personal Details
First Name: 
Last Name: 
Specific Questions
1. What is the research priority (a significant research knowledge gap or unmet need) you are nominating? How would a TCR in this area greatly advance our understanding of this issue? (200 word maximum): 
The research priority is to ensure that Indigenous Australians are included in benefits arising from the impact of the ‘Big Data to Knowledge’ (BD2K) model that underpins precision and personalized medicine and related developments. BD2K relies on large datasets obtained from patients and research participants over time. The inclusion of diverse population groups is essential, and specific initiatives to ensure diverse participation are being included in international projects such as the Precision Medicine initiative in the USA. The BD2K model presents particular challenges and risks for Indigenous Australian. If implemented inappropriately, it is unlikely to lead to health benefits and may even cause harm. At the same time, if Indigenous people are excluded from the transformation of medical research and practice by data science, they may not be included in the benefits, leading to an increase in the health gap. Legal, ethical and social research, combined with research in data science, genomics, epigenomics and related fields is needed to establish a national framework under Indigenous control that respects and protects Indigenous cultures and allows Indigenous people to participate in and access the benefits of BD2K research and medical practice without risking social or cultural harm.
2. What are the relevant Australian Government Priorities, and/or Ministerially-agreed State and Territory health research priorities linked to your nominated priority? (200 word maximum): 
The Australian Government Science and Health Priorities, Health Capabilities Statement identifies the following practical challenges that are relevant to this TCR: Better models of health care and services that improve outcomes, reduce disparities for disadvantaged and vulnerable groups, increase efficciency and provide greater value for a given expenditure, Improved prediction, identification, tracking, prevention and management of emerging local and regional health threats, Better health outcomes for Indigenous people, with strategies for both urban and regional communities, Effective technologies for individuals to manage their own health care, for example, using mobile apps, remote monitoring and online access to therapies; and the following opportunities: Ιmproving access to and links between datasets as well as better coordination of data infrastructure and digital technologies. Prioritising research to develop strategies to improve the health outcomes of Aboriginal and Torres Strait Islander people
3. How would a TCR in this area contribute to Aboriginal and Torres Strait Islander health and improve health outcomes for the individual and/or community? (200 word maximum): 
This TCR will lead to a framework that ensures that established principles for health and medical research involving Indigenous people and communities (community engagement, benefit, sustainability & transferability, and building capacity) are extended to the specific challenges of BD2K research and practice, particularly the need to collect, aggregate and reuse large, sensitive datasets over time. The framework that is created through this TCR will ensure that medical research and practice is based on data sets that are appropriate for Indigenous communities. It will ensure that Indigenous people receive the full benefits of new approaches to: medical diagnosis and treatment management, identifying people with unusual disease risk profiles and drug responses. It will enable epigenetic changes to the structure of genomes to be identified that modify how genomes function to affect health and wellbeing. It will ensure that Indigenous Australians included in a new wave of diagnostic, prognostic and predictive medical tests; new strategies for assessing disease risk; new interventions that prevent or reduce the risk of disease; new drugs and other therapies that can be used to treat or cure disease; new approaches and specific devices for monitoring health, and monitoring the effectiveness of preventative and therapeutic health interventions.
4. How will the TCR reduce the burden of disease on the health system and Australian economy? (200 word maximum): 
The BD2K approach will impact all areas of health and medicine. In the Indigenous health context, four areas are worth particular mention. Rare diseases: Rare and locally prevalent genetic diseases vary among human populations and little is known about their occurrence in Indigenous communities. This TCR will lead to improved disease identification and diagnosis, earlier intervention and improved health outcomes in Indigenous communities. Cancer diagnosis and treatment: There are appreciable differences between human populations in the genomic variation and somatic mutations that cause cancer (see doi: 10.1001/jamaoncol.2016.1854). This TCR will ensure appropriate use of genomic data in cancer diagnosis and treatment for Indigenous communities Complex disease: The causes of complex diseases can very greatly among human populations, despite similarities in clinical presentation and may be different between Indigenous and non-Indigenous communities. This TCR will provide the framework needed to ensure that these differences are understood in tailoring health care and medical practice to Indigenous communities. Epigenomic indicators of genome function have great potential for understanding and treating ill health resulting from social and environmental factors, including trans-generational effects. This TCR will ensure appropriate access by Indigenous communities to this area that promises to play an increasingly important role in medicine.
5. Are there any reports or findings that support your nomination for the suggested topic? (200 word maximum): 
The importance of including diverse human populations (and by inference, Indigenous Australian communities) in BDTK approaches to health and medical research and practice is supported by: 1. Evidence of local, regional and population-specific differences in genomic variation associated with disease, particularly rare genetic diseases and cancer. 2. Evidence of differences in the biological mechanisms and risk factors for complex disease among minority populations (e.g., doi:10.1038/nature13425) 3. Funding for large international projects predicated on the need for inclusion of diverse human populations. The NIH-Wellcome Trust H3Africa Project is the most prominent. Others include the Genomics Asia 10K Project, The Centre for Arab Genomics Studies, Genomics in the Americas project. 4. Funding programs within NIH and other agencies to enhance diversity in biomedical data science initiatives aimed at developing precision and personalized medicine.

Page reviewed: 30 August, 2018