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Draft Road Map 3: A Strategic Framework for Improving Aboriginal and Torres Strait Islander Health through Research submission

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Specific Questions
Question 1A: Is the proposed objective of Road Map 3 relevant?: 
Question 1B: Why/why not? Please provide further comments to support your response to Question 1A.: 
The proposed overall objective of Road Map 3 is relevant for Aboriginal and/or Torres Strait Islander health through research. The following points are made: • That research priorities are driven by Aboriginal and/or Torres Strait Islander communities is all critical factors for enabling significant improvement to health. Aboriginal people are the experts in their own lives, not researchers. • The breadth of the definition of Aboriginal and/or Torres Strait Islander health within RM3 to cover the dimensions of physical, mental and social and emotional wellbeing of not only the individual but families and communities is a positive, crucial to improve health through research. • Meaningful consultation and collaboration is critical for Aboriginal people to self-determine the research being undertaken regarding tbeir health. Community consolation needs to be prioritised as a first step to be taken before any other process can proceed. A clear process with RM3 is need to ensure that consultation is not an after-thought by researchers. • If Road Map 3 is to be successful, all Aboriginal health research projects need to have an Aboriginal and/or Torres Strait Islander researcher involvement, preferably research leadership, and some form of Aboriginal and Torres Strait Islander governance - not advisory - process.
Question 2A: Are the three priority areas of Road Map 3 accurate?: 
Question 2B: Why/why not? Please provide further comments to support your response to Question 2A: 
The three priority areas of Road Map 3 are accurate, overall. Strengthening the Aboriginal and/or l Torres Strait Islander health and medical research workforce is crucial for Road Map 3 to be successful. Supporting community based researchers is also important, as is working with professional peak bodies. - What is missing in this section is a guide to the sort professional peak bodies to be contacted . Which professional peak bodies does this include or exclude and how were these decisions (to contact or not contact a particular group) made? The Road Map could be strengthened by including a (non-exclusionary) set of bodies such as Lowitja, AIATSIS, AIDA, NATSHIW A, IAHA, CATSINAM and asking researchers to detail why they chose to contact the particular groups that they did contact, rather than others. - In section 4.2 'Engage with Aboriginal and Torres Strait Islander Communities' under 'Supporting research to engage efficiently with communities'. This section is positive, but the word 'encourage' should be change to ensure. Encouraging is a weak work that does not necessarily result in an action by the researcher or accountability of the researcher. - In section 4.3 there should be a greater focus on preventative health measures. Aboriginal and/or Torres Strait Islander people experience excessively high levels of chronic disease and this is reflected in the burden of disease measure. However, in the document as it there only a limited focus on Aboriginal and/or Torres Strait Islander people being healthy rather than treating a health problem once it's progressed to a chronic issue.
Question 4: Is there anything missing from Road Map 3? Please provide further details: 
Road Map 3 does not adequately deal with Indigenous data or Indigenous governance of data. Indigenous data governance refers to Indigenous rights and interests around data the relate to Aboriginal and Torres Strait Islander people, around who determines data access and control of those data and issues around data storage and security. Indigenous data governance is a topic of growing national interest and activity in Australia. International agreements such as the 2007 UN Declaration of the Rights of Indigenous Peoples as well as the Indigenous recognition in the International Open Data Charter support the concept and implementation of Indigenous data governance in Australia. The omission of Indigenous data governance as a priority in its own right is a significant gap from Road Map 3 and this situation is in contrast to what is happening in places like Aotearoa, New Zealand, Canada and the United States. For example: • In Aoteatoa NZ, the Te Mana Ranaunga Charter (established 2015) provides principles data sovereignty as they apply to Maori data. http://www.temanararaunga.maori.nz/tutohinga/ • In Canada, OCAP® (Ownership, Control, Access, Possession) (established 2010) provides a set of clear standards about how First Nations data should be collected, protected, used or shared. http://fuigc.ca/ocap.html • In the United States Indigenous Data Sovereignty process and practice standards are currently being developed across the various tribal organisations such as tribal epidemiology centres. http://www.policylink.org/sites/default/files/MicheleSuina­RealizinglndigenousDataSovereignty.pdf The imperative for the current global push for Indigenous governance processes around Indigenous data is driven by the long history of the misuse of Indigenous related data by non-Indigenous researchers, agencies and organisations. The rapid rise big data and data linkage using Indigenous health data, again largely non-Indigenous controlled and led, raise specific issues which include: - Ongoing lack of consideration on Indigenous rights or interests to their own data - High use of secondary data - often without the consent of the people those data represents - Potential for low quality analysis where analyses are data driven - Analysis of Indigenous data by non-Indigenous researchers with little or no expertise in Indigenous issues or understanding of Indigenous lifeworlds - Decontextualisation of Indigenous data from the people and socio-cultural complexities from which those data are drawn - Potential of algorithms, developed without Indigenous leadership, to reproduce deficit data discourses To address this gap, it is recommended that the l\TJIMRC convene a workshop on how to include Indigenous data governance within the landscape of how Indigenous health research is undertaken in Australia in the near future. Contact should be made with the Maiam nayri Wingara Indigenous Data Sovereignty group through any of the following members: 1. Professor Maggie Walter, University of Tasmania 2. Associate Professor Ray Lovett, ANU 3. Associate Professor Gawaian Bodkin-Andrews, University of Technology Sydney 4. Associate Professor Vanessa Lee, University of Sydney.

Page reviewed: 31 July, 2018