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Maple-Brown, Louise
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Maple-Brown, Louise
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Journal Article Developing an integrated clinical decision support system for the early identification and management of kidney disease-building cross-sectoral partnerships.(2024-03-07) ;Gorham, Gillian; ;Heard, Sam ;Moore, Liz; ; ;Majoni, Sandawana William ;Chen, Winnie ;Balasubramanya, Bhavya ;Talukder, Mohammad Radwanur ;Pascoe, Sophie ;Whitehead, Adam; ; ; Cass, AlanThe burden of chronic conditions is growing in Australia with people in remote areas experiencing high rates of disease, especially kidney disease. Health care in remote areas of the Northern Territory (NT) is complicated by a mobile population, high staff turnover, poor communication between health services and complex comorbid health conditions requiring multidisciplinary care.This paper aims to describe the collaborative process between research, government and non-government health services to develop an integrated clinical decision support system to improve patient care.Building on established partnerships in the government and Aboriginal Community-Controlled Health Service (ACCHS) sectors, we developed a novel digital clinical decision support system for people at risk of developing kidney disease (due to hypertension, diabetes, cardiovascular disease) or with kidney disease. A cross-organisational and multidisciplinary Steering Committee has overseen the design, development and implementation stages. Further, the system's design and functionality were strongly informed by experts (Clinical Reference Group and Technical Working Group), health service providers, and end-user feedback through a formative evaluation.We established data sharing agreements with 11 ACCHS to link patient level data with 56 government primary health services and six hospitals. Electronic Health Record (EHR) data, based on agreed criteria, is automatically and securely transferred from 15 existing EHR platforms. Through clinician-determined algorithms, the system assists clinicians to diagnose, monitor and provide guideline-based care for individuals, as well as service-level risk stratification and alerts for clinically significant events.Disconnected health services and separate EHRs result in information gaps and a health and safety risk, particularly for patients who access multiple health services. However, barriers to clinical data sharing between health services still exist. In this first phase, we report how robust partnerships and effective governance processes can overcome these barriers to support clinical decision making and contribute to holistic care. - Publication
Journal Article Supporting healthy lifestyles for First Nations women and communities through co-design: lessons and early findings from remote Northern Australia.(2024-05-28) ;Dias, Tara; ;Canuto, Karla ;Boyle, Jacqueline A ;D'Antoine, Heather ;Hampton, Denella ;Martin, Kim ;Phillips, Jessica ;Bartlett, Norlisha ;Mcintyre, H David ;Graham, Sian; ; ;McCarthy, Leisa ;Kirkham, RenaeThe period before, during, and after pregnancy presents an opportunity to reduce diabetes-related risks, which in Australia disproportionately impact Aboriginal and Torres Strait Islander women. Collaboration with Aboriginal and Torres Strait Islander women/communities is essential to ensure acceptability and sustainability of lifestyle modifications. Using a novel co-design approach, we aimed to identify shared priorities and potential lifestyle strategies. We also reflected on learnings from this approach.We conducted 11 workshops and 8 interviews at two sites in Australia's Northern Territory (Central Australia and Top End), using experience-based co-design (EBCD) and incorporating principles of First Nations participatory research. Workshops/interviews explored participant' experiences and understanding of diabetes in pregnancy, contextual issues, and potential lifestyle strategies. Participants included three groups: 1) Aboriginal and Torres Strait Islander women of reproductive age (defined as aged 16-45 years); 2) Aboriginal and Torres Strait Islander community members; and 3) health/community services professionals. The study methodology sought to amplify the voices of Aboriginal women.Participants included 23 women between ages 16-45 years (9 with known lived experience of diabetes in pregnancy), 5 community members and 23 health professionals. Key findings related to identified priority issues, strategies to address priorities, and reflections on use of EBCD methodology. Priorities were largely consistent across study regions: access to healthy foods and physical activity; connection to traditional practices and culture; communication regarding diabetes and related risks; and the difficulty for women of prioritising their health among competing priorities. Strategies included implementation of a holistic women's program in Central Australia, while Top End participants expressed the desire to improve nutrition, peer support and community awareness of diabetes. EBCD provided a useful structure to explore participants' experiences and collectively determine priorities, while allowing for modifications to ensure co-design methods were contextually appropriate. Challenges included the resource-intensive nature of stakeholder engagement, and collaborating effectively with services and communities when researchers were "outsiders".A hybrid methodology using EBCD and First Nations participatory research principles enabled collaboration between Aboriginal women, communities and health services to identify shared priorities and solutions to reduce diabetes-related health risks. Genuine co-design processes support self-determination and enhance acceptability and sustainability of health strategies. - Publication
Journal Article Codesigning enhanced models of care for Northern Australian Aboriginal and Torres Strait Islander youth with type 2 diabetes: study protocol.(2024-03-06) ;Kirkham, Renae ;Puszka, Stefanie; ;Freeman, Natasha ;Weaver, Emma ;Morris, Jade ;Mack, Shiree ;O'Donnell, Vicki ;Boffa, John; ; ; ;Graham, Sian ;Scott, Lydia ;Sinha, Ashim K; ;Shaw, Jonathan E ;Azzopardi, Peter ;Brown, Alex ;Davis, Elizabeth ;Wicklow, BrandyPremature onset of type 2 diabetes and excess mortality are critical issues internationally, particularly in Indigenous populations. There is an urgent need for developmentally appropriate and culturally safe models of care. We describe the methods for the codesign, implementation and evaluation of enhanced models of care with Aboriginal and Torres Strait Islander youth living with type 2 diabetes across Northern Australia.Our mixed-methods approach is informed by the principles of codesign. Across eight sites in four regions, the project brings together the lived experience of Aboriginal and Torres Strait Islander young people (aged 10-25) with type 2 diabetes, their families and communities, and health professionals providing diabetes care through a structured yet flexible codesign process. Participants will help identify and collaborate in the development of a range of multifaceted improvements to current models of care. These may include addressing needs identified in our formative work such as the development of screening and management guidelines, referral pathways, peer support networks, diabetes information resources and training for health professionals in youth type 2 diabetes management. The codesign process will adopt a range of methods including qualitative interviews, focus group discussions, art-based methods and healthcare systems assessments. A developmental evaluation approach will be used to create and refine the components and principles of enhanced models of care. We anticipate that this codesign study will produce new theoretical insights and practice frameworks, resources and approaches for age-appropriate, culturally safe models of care.The study design was developed in collaboration with Aboriginal and Torres Strait Islander and non-Indigenous researchers, health professionals and health service managers and has received ethical approval across all sites. A range of outputs will be produced to disseminate findings to participants, other stakeholders and the scholarly community using creative and traditional formats. - Publication
Journal Article Engagement and partnership with consumers and communities in the co-design and conduct of Research: Lessons from the INtravenous iron polymaltose for First Nations Australian patients with high FERRitin levels on haemodialysis (INFERR) clinical trial.(2024-07-15) ;Long, Stephanie ;Ross, Cheryl ;Koops, Joan ;Coulthard, Katherine ;Nelson, Jane ;Shapkota, Archana Khadka ;Hewett, Leiana; ;Graham, Jessica; ; ;Hoppo, Libby; ;Pawar, Basant; ;Gold, Lorna Murakami ;Rathnayake, Geetha; ; ; ; ; ; ; ; ; ; ;Lawton, P ;Barzi, Federica; ;Mayo, Mark ;Cass, AlanEngagement and partnership with consumers and communities throughout research processes produces high quality research meeting community needs and promoting translation of research into improved policy and practice. Partnership is critical in research involving Aboriginal and/or Torres Strait Islander people (First Nations Peoples) to ensure cultural safety. We present lessons from the design, implementation and progress of the National Health and Medical Research Council funded INtravenous iron polymaltose for First Nations Australian patients with high FERRitin levels on hemodialysis (INFERR) clinical trial.The trial was designed to understand the benefits and harms of iron therapy in First Nations Australians on haemodialysis with anaemia and hyperferritinaemia. The lack of evidence for treatment was discussed with patients who were potential participants. A key element ensuring safe conduct of the INFERR trial was the establishment of the Indigenous Reference Groups (IRGs) comprising of dialysis patients based in the Top End of Australia and Central Australia. Two IRGs were needed based on advice from First Nations communities and researchers/academics on the project regarding local cultural differences and approaches to trial conduct. The IRGs underpin culturally safe trial conduct by providing input into study materials and translating study findings into effective messages and policies for First Nations dialysis patients. Throughout the trial conduct, the IRGs' role has developed to provide key mechanisms for advice and guidance regarding research conduct both in this study and more broadly. Support provided to the IRGs by trial First Nations Research Officers and independent First Nations researchers/academics who simplify research concepts is critical. The IRGs have developed feedback documents and processes to participants, stakeholders, and the renal units. They guarantee culturally safe advice for embedding findings from the trial into clinical practice guidelines ensuring evidence-based approaches in managing anaemia in haemodialysis patients with hyperferritinaemia.Active consumer and community partnership is critical in research conduct to ensure research impact. Strong partnership with consumers in the INFERR clinical trial has demonstrated that First Nations Consumers will engage in research they understand, that addresses health priorities for them and where they feel respected, listened to, and empowered to achieve change.In this paper, we present the importance of actively involving consumers in the planning, implementation and conduct of research using the example of a clinical trial among Aboriginal and/or Torres Strait Australians (First Nations Australians) who have kidney disease and are currently receiving haemodialysis. The study assesses how safe and effective it is for people on dialysis to receive iron given through the vein during dialysis when they have anaemia and high levels of a blood test called ferritin, a test used routinely to measure iron levels. Two consumer reference groups of First Nations patients on dialysis, one based in the Top End of Australia and the other based in Central Australia, are supported by First Nations Research Officers and Research Academics to make sure that the research is performed in a way that involves, respects and values First Nations participation, culture, and knowledge. Active consumer and community partnership in this study has supported robust research governance processes which we believe are crucial for knowledge translation to have a positive impact for patients. - Publication
Journal Article Technology advances in diabetes pregnancy: right technology, right person, right time.(2024-07-05) ;McLean, Anna; Murphy, Helen RThis review outlines some of the extraordinary recent advances in diabetes technology, which are transforming the management of type 1 diabetes before, during and after pregnancy. It highlights recent improvements associated with use of continuous glucose monitoring (CGM) but acknowledges that neither CGM nor insulin pump therapy are adequate for achieving the pregnancy glucose targets. Furthermore, even hybrid closed-loop (HCL) systems that are clinically effective outside of pregnancy may not confer additional benefits throughout pregnancy. To date, there is only one HCL system, the CamAPS FX, with a strong evidence base for use during pregnancy, suggesting that the pregnancy benefits are HCL system specific. This is in stark contrast to HCL system use outside of pregnancy, where benefits are HCL category specific. The CamAPS FX HCL system has a rapidly adaptive algorithm and lower glucose targets with benefits across all maternal glucose categories, meaning that it is applicable for all women with type 1 diabetes, before and during pregnancy. For women of reproductive years living with type 2 diabetes, the relative merits of using non-insulin pharmacotherapies vs diabetes technology (dipeptidyl peptidase-4 inhibitors, glucagon-like peptide-1 receptor agonists and sodium-glucose cotransporter 2 inhibitors) are unknown. Despite the urgent unmet need and potential benefits, studies of pharmacotherapy and technology use are extremely limited in pregnant women with type 2 diabetes. - Publication
Journal Article Benchmarking for healthy food stores: protocol for a randomised controlled trial with remote Aboriginal and Torres Strait Islander communities in Australia to enhance adoption of health-enabling store policy and practice.(2024-07-05) ;Brimblecombe, Julie ;Ferguson, Megan ;McMahon, Emma ;Fredericks, Bronwyn ;Turner, Nicole ;Pollard, Christina; ;Batstone, Joanna ;McCarthy, Leisa ;Miles, Eddie ;De Silva, Khia; ;Chatfield, Mark ;Hill, Amanda ;Christian, Meaghan ;van Burgel, Emma ;Fairweather, Molly ;Murison, Anna ;Lukose, Dickson ;Gaikwad, Surekha ;Lewis, Meron ;Clancy, Rebekah; ;Uhlmann, Kora ;Funston, Sarah ;Baddeley, Laura ;Tsekouras, Sally ;Ananthapavan, Jaithri ;Sacks, GaryLee, AmandaAboriginal and Torres Strait Islander communities in remote Australia have initiated bold policies for health-enabling stores. Benchmarking, a data-driven and facilitated 'audit and feedback' with action planning process, provides a potential strategy to strengthen and scale health-enabling best-practice adoption by remote community store directors/owners. We aim to co-design a benchmarking model with five partner organisations and test its effectiveness with Aboriginal and Torres Strait Islander community stores in remote Australia.Study design is a pragmatic randomised controlled trial with consenting eligible stores (located in very remote Northern Territory (NT) of Australia, primary grocery store for an Aboriginal community, and serviced by a Nutrition Practitioner with a study partner organisation). The Benchmarking model is informed by research evidence, purpose-built best-practice audit and feedback tools, and co-designed with partner organisation and community representatives. The intervention comprises two full benchmarking cycles (one per year, 2022/23 and 2023/24) of assessment, feedback, action planning and action implementation. Assessment of stores includes i adoption status of 21 evidence-and industry-informed health-enabling policies for remote stores, ii implementation of health-enabling best-practice using a purpose-built Store Scout App, iii price of a standardised healthy diet using the Aboriginal and Torres Strait Islander Healthy Diets ASAP protocol; and, iv healthiness of food purchasing using sales data indicators. Partner organisations feedback reports and co-design action plans with stores. Control stores receive assessments and continue with usual retail practice. All stores provide weekly electronic sales data to assess the primary outcome, change in free sugars (g) to energy (MJ) from all food and drinks purchased, baseline (July-December 2021) vs July-December 2023.We hypothesise that the benchmarking intervention can improve the adoption of health-enabling store policy and practice and reduce sales of unhealthy foods and drinks in remote community stores of Australia. This innovative research with remote Aboriginal and Torres Strait Islander communities can inform effective implementation strategies for healthy food retail more broadly.ACTRN12622000596707, Protocol version 1. - Publication
Journal Article New and emerging therapies for diabetic kidney disease.(2024-01-02) ;Correa-Rotter, Ricardo; ;Sahay, Rakesh ;Tuttle, Katherine RUlasi, Ifeoma I682 - Publication
Journal Article Social and economic factors, maternal behaviours in pregnancy and neonatal adiposity in the PANDORA cohort.(2020-01-18) ;Krista Longmore D ;Laurel MBE ;Barzi F ;Lee IL ;Kirkwood M; ;Boyle JA ;O'Dea K ;Zimmet P ;Oats J ;Catalano P ;David Mcintyre, H ;Brown ADH ;Shaw JEAustralian Indigenous women experience high rates of social disadvantage and type 2 diabetes (T2D) in pregnancy, but it is not known how social factors and maternal behaviours impact neonatal adiposity in offspring of women with hyperglycaemia in pregnancy. Participants were Indigenous (n=404) and Europid (n=240) women with gestational diabetes mellitus (GDM) or T2D in pregnancy and their offspring in the Pregnancy and Neonatal Diabetes Outcomes in Remote Australia (PANDORA) study. Social, economic factors, and maternal behaviours were measured in pregnancy and six neonatal anthropometric outcomes were examined after birth. On univariate analysis, maternal education <12 years (p=0.03), unemployment (p=0.001), welfare income vs no welfare income (p=0.001), lower area based socio-economic score (p<0.001), and fast food intake >2 times/week (p=0.002) were associated with increased sum of skinfolds (SSF) in offspring. Smoking was significantly associated with a reduction in anthropometric measures, except SSF. In multivariable models adjusted for ethnicity, BMI and hyperglycaemia, social and economic factors were no longer significant predictors of neonatal outcomes. Smoking was independently associated with a reduction in length, head circumference and fat free mass. Frequent fast food intake remained independently associated with SSF (β-coefficient 1.08mm, p=0.02). In women with hyperglycaemia in pregnancy, social factors were associated with neonatal adiposity, particularly skinfold measures. Promoting smoking cessation and limited intake of energy-dense, nutrient-poor foods in pregnancy are important to improve neonatal adiposity and lean mass outcomes. Addressing inequities in social and economic factors are likely to be important, particularly for Indigenous women or women experiencing social disadvantage.1691 - Publication
Journal Article Association between hyperglycaemia in pregnancy and growth of offspring in early childhood: The PANDORA study.(2022-05-29); ;Longmore DK ;Barzi F ;Barr, ELM ;Webster V ;Wood A ;Simmonds A ;Brown ADH; ;Boyle JA ;Oats J ;McIntyre HD ;Shaw JE ;Craig MEBACKGROUND: Few studies have assessed whether children exposed to in utero hyperglycaemia experience different growth trajectories compared to unexposed children. OBJECTIVES: To assess association of type 2 diabetes (T2D) and gestational diabetes mellitus (GDM) with early childhood weight, length/height and body mass index (BMI) trajectories, and with timing and magnitude of peak BMI in infancy. METHODS: PANDORA is a birth cohort recruited from an Australian hyperglycaemia in pregnancy register, and women with normoglycaemia recruited from the community. Offspring growth measures were obtained from health records over a median follow-up of 3.0 years (interquartile range 1.9-4.0). This analysis included children born to Aboriginal mothers with in utero normoglycaemia (n = 95), GDM (n = 228) or T2D (n = 131). Growth trajectories (weight, length/height and BMI) were estimated using linear mixed models with cubic spline functions of child age. RESULTS: After adjustment for maternal factors (age, BMI, parity, smoking, and socioeconomic measures) and child factors (age, gestational age at birth, and sex), children born to mothers with T2D or GDM had lower weight, length/height and BMI trajectories in infancy than children born to mothers with normoglycaemia, but similar weight and BMI by completion of follow-up. Children exposed to T2D had lower mean peak BMI 17.6 kg/m(2) (95% confidence interval [CI] 17.3-18.0) than children exposed to normoglycaemia (18.6 kg/m(2) [18.1-18.9]) (p = 0.001). CONCLUSIONS: Maternal hyperglycaemia was associated with differences in early childhood growth trajectories after adjustment for maternal BMI. Exploration of associations between in utero hyperglycaemia exposure and growth trajectories into later childhood is required.3309 - Publication
Journal Article Incorporating Aboriginal women's voices in improving care and reducing risk for women with diabetes in pregnancy - A phenomenological study.(2021-09-16) ;Wood AJ ;Graham S ;Boyle JA ;Marcusson-Rababi B ;Anderson S; ;McIntyre HD; Kirkham RBACKGROUND: There is a high burden of gestational diabetes (GDM) and type 2 diabetes in pregnancy for Aboriginal and Torres Strait Islander women. Postpartum diabetes programs have the potential to prevent recurrent GDM and improve management of type 2 diabetes. However, data on such programs are limited, particularly in the Indigenous context. We aimed to explore Aboriginal Australian women's and health providers' preferences for a program to prevent and improve diabetes after pregnancy. METHODS: A phenomenological methodology underpinned semi-structured in-depth interviews with eleven Aboriginal women and seven health professionals across the Northern Territory from October 2019- February 2020. Interviews were analysed using an inductive analysis framework to address the barriers and enablers of proposed diabetes prevention programs identified by participants. RESULTS: Identified structural barriers to lifestyle change included: food insecurity, persuasive marketing of unhealthy food options, lack of facilities and cultural inappropriateness of previous programs. Enablers to lifestyle change included: a strong link between a healthy lifestyle and connection with Country, family and community. Suggested strategies to improve lifestyle included: co-designed cooking classes or a community kitchen, team sports and structural change (targeting the social determinants of health). Lifestyle change was preferred over metformin to prevent and manage diabetes after pregnancy by participants and health care providers. CONCLUSIONS: We recommend individual level programs be designed alongside policies that address systemic inequalities. A postpartum lifestyle program should be co-designed with community members and grounded in Aboriginal conceptions of health to adequality address the health disparities experienced by Aboriginal people in remote communities.2017