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2015 Scientific Supplement

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2015 Scientific Supplement 2015 SCIENTIFIC SUPPLEMENT are at the of everything we do At the Telethon Kids Institute we are committed to research that makes a real difference. We want every child to have the very best opportunity to enjoy a happy and healthy childhood. Our team of almost 600 dedicated researchers and support staff are passionate about discovering causes, cures and treatments for the illnesses and diseases that target our kids and young people. With top scientific minds and facilities, a reputation for being at the forefront of global child health research and a track record to prove it, Telethon Kids is world-class. Yet we know that our work is even stronger when we work together. We are committed to collaboration. We create and facilitate connections with researchers, practitioners, service providers, our partners and the community, to maximise the potential in what we do and deliver tangible benefits to kids and families. Discover. Prevent. Cure. Together, that’s how we make a difference. Find out more at telethonkids.org.au ABORIGINAL HEALTH AND WELLBEING Overview Pearson (Manager Aboriginal Research Program) and supported by the Institute’s The needs of Aboriginal children and Aboriginal Research Leadership Group. families have always been in the forefront of the Institute’s thinking and action and The outcomes of these processes as such has featured in the restructure have led to the development of the of the Institute and in particular in its Institute’s Working Together Strategic governance and research development Plan (2013 -2017) and the objectives of capacity. The endeavor here is to ensure the Institute’s Commitment to Aboriginal that over time Aboriginal health research Children and Families (2013-2017) with a is a whole of Institute approach and that recommendation that ACCARE would be Aboriginal communities and organisations reconstituted as an advisory committee participate in all stages of the research reporting directly to the Director Telethon process ultimately resulting in sustainable Kids Institute – Professor Jonathan positive change in the health and Carapetis. wellbeing of Aboriginal children. With the exception of the Director the The Aboriginal Health and Wellbeing membership is now entirely comprised Group is supported by and comprised of of Aboriginal people. These members the following in delivering on the aims and have not been engage to represent their objectives of the Institute’s Commitment regions rather that they bring from across to Aboriginal Children and Families (2013- the State a vast range and much needed 2107) Statement consistent with the skills and experiences to assist in the Working Together Strategic Plan (2013- Council’s work. 2017). The ACCARE members are: ABORIGINAL CONSULTATIVE COMMITTEE ADVISING RESEARCH • Kate George - Chair AND EVALUATION (ACCARE) • Rhonda Marriott • June Oscar • Josie Janz Background • Ian Trust As part of the Institute’s strategic planning • Darryl Kickett process that was conducted in 2013, a • Jon Ford parallel strategic process was undertaken • Jonathan Carapetis to ensure that the needs of Aboriginal • Glenn Pearson families were considered. This parallel process was led by Emerita Professor The goal of ACCARE is: Rhonda Marriott (Senior Aboriginal To provide high level advice to the Researcher), Dr Michael Wright (Senior Director around strategic directions Aboriginal Researcher) and Glenn and operational elements relating 4 | TELETHON KIDS INSTITUTE to Aboriginal health research at the the health and wellbeing of these families. Telethon Institute with the aim of ensuring A third and final Open Space forum facilitation, translation and application of was held in 2015 to look at identifying research finding into policy and practice. a process to prioritise our research. The outcomes of all three Forums were ABORIGINAL HEALTH RESEARCH analyzed to identify areas to inform an FOCUS AREA STEERING COMMITTEE Open Space Action Plan. As part of the Institute’s Working Together This Action Plan was presented to the Strategic Plan a Research Focus Area Elders who participated in the three Open Strategic Framework was developed Space Forums all of which will be actioned to reflect four key areas of research of in 2016. Of these and of substantial interest which Aboriginal Health was one. Under to the Elders is the development of a each RFA a Steering Committee was protocols for conducting research in the established and comprised of 10-15 Nyoongar community. senior researchers drawn from across the Institute, PMH and SPACH. The Open Space Forum approach will be considered in further relationship building The purpose of each RFA Steering and consultation with other Aboriginal Committee is to facilitate the communities where the Institute is development and implementation of high conducting research. quality collaborative research projects consistent with the Institute Strategic Plan KULUNGA ABORIGINAL RESEARCH and RFA research goals and to ensure our DEVELOPMENT UNIT (KARDU) research makes a difference. The Telethon Kids Institute Commitment to The Aboriginal Health RFA Steering Aboriginal Children and Families outlines Committee has acknowledged that a blueprint for action for the Institute to it plays a dual role across the Institute continue its work in Aboriginal health in both promoting an increase in the research and translate outcomes into numbers of Aboriginal health related positive sustainable change in the health research projects within the Aboriginal and well-bring of Aboriginal children and Health area as well as across the other families. The Commitment outlines the three RFA’s. following priorities: In 2014 the AHRFA Steering Committee • Aboriginal Governance for Ensuring a held two Open Space Forums to create clear Aboriginal voice and influence an opportunity for researchers to engage with the Aboriginal community. The • Setting Research Priorities for Research outcomes of these forums will contribute that reflects the needs of Aboriginal to a deepening in the relationship families between researchers and Aboriginal • Aboriginal Employment and Career people to ensure that our research better Development Strategy for Developing reflects the needs of Aboriginal families as Aboriginal Staff and Students well as translates into positive change in • Research Development and Support ANNUAL REPORT 2015 | 5 for Building Our Capacity to Do • Promote the development of Research that Responds to the Needs Indigenous Knowledge and its of Aboriginal Families application as a strategy to maximise • Showcase Projects for Demonstrating research outcomes for researchers, Our Best Aboriginal families and their children. • Funding Support for Aboriginal • Take responsibility for the management Research and Researchers for Investing of ACCARE, and the establishment in the Future and management of the Aboriginal • Communication and Dissemination for Research Projects, Clearing House and Keeping Us Connected to Community Government Relations Forums. • In partnership with the In relation to the priority of Research Communications and Development Development and Support, the Kulunga team, develop and present on a Aboriginal Research Development Unit regular basis, a series of in-house (KARDU) has been established by the training modules for research staff on Institute with Glenn Pearson as Head of conducting research in Aboriginal the Unit. He was joined by Kristen White communities. - Program Manager (Kimberley and Pilbara), then Mara West and Isabelle The following tasks have been undertaken Adams in June 2015 who jo share the Unit in 2015: The key focus of the Unit is to facilitate research interest and opportunities • Operational Plan to guide the that involve Aboriginal families and operations of the Unit completed communities as well as building the • Databases of Aboriginal communities capacity and development of Institute and traditional owner groups and researchers working on Aboriginal Aboriginal Community Controlled projects. Services Organisations. • Planning for Aboriginal Communication The Unit has the following specific tasks in and Dissemination Strategy relation to its key focus: • Information sessions for Aboriginal people and organisations • Establish and maintain relationships • Distribution of Institute Information with Aboriginal Communities and the packs to Aboriginal organisations Aboriginal Community Controlled • Attendance at Aboriginal community Services Sector. events or site visits to Aboriginal • Support for Research Strategy Leaders organisations. and Other Researchers in Indigenous • Planning of specific content and research methodologies, research activities for Aboriginal Community design, relationship building with Participation in Health Research Aboriginal communities and sourcing workshops. personnel. • Attendance at Research Working • Building the research capacity Parties meetings of Aboriginal and non-Aboriginal • Organisation of ACCARE meetings and Researchers. minutes 6 | TELETHON KIDS INSTITUTE • Planning for Aboriginal Research Knowledge Network. Projects Forums • Planning for development of set of WA ABORIGINAL HEALTH research protocols for conducting KNOWLEDGE NETWORK (WAAHKN) research in Aboriginal health. Starting in 2011 the Telethon Kids Institute working in partnership with the Rural RESEARCH DEVELOPMENT AND Clinical School of WA (RCSWA) and SUPPORT the Aboriginal Health Council of WA There are a number of research programs (AHCWA) commenced a joint process and projects at the Institute initiated to to establishing a
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