Chapter 7 - Research and data

  1. Research and data

Overview

7.1Research is the foundation for advancing our knowledge of what causes diabetes, and how we can effectively prevent and manage the disease. The strength of both basic and applied research will continue to play a critical role in Australia’s ability to manage all types of diabetes. Australia boasts world-class scientists in this field, many of whom are consistently producing high-impact research.

7.2The inquiry generated substantial evidence on issues pertaining to the funding of diabetes research. The ensuring discussion thus examines the current sources and levels of funding in Australia. The diabetes research workforce and physical and digital research infrastructure is also critically examined.

7.3The question of how best to conduct research in such a complex area is a consistent feature of evidence received in support of this inquiry. As such, the final section of this chapter examines potential strategies for better coordinating current research efforts and making research more inclusive of patient’s voice through research co-design. The question of the future of research in the field of diabetes and obesity is also examined.

Diabetes research funding in Australia

7.4In its submission to the inquiry, the Australian Centre for Accelerating Diabetes Innovations Research (ACADI) highlighted: ‘[the] behind-the-scene story to every new drug, every new technology, every new treatment for diabetes […] is research.’[1] In Australia, research into diabetes is primarily funded by the Australian Government through the National Health and Medical Research Council (NHMRC), the Australian Research Council (ARC), and the Medical Research Future Fund (MRFF).[2]

7.5The Department of Health and Aged Care submission outlined the scale of government investment in this field:

  • Since 2013, the NHMRC has provided $513.8 million in funding for diabetes research
  • Between 2015 and 2023, the MRFF has invested $104.19 million in 19 grants with a focus on diabetes research
  • From 2023, the MRFF Preventive and Public Health Research initiative will provide $596.5 million over 10 years to fund targeted research into new ways to address risk factors for chronic and complex diseases in Australia, including diabetes
  • Between 2021 and 2023, the ARC has invested over $14 million for research into diabetes and obesity.[3]
    1. Alongside government granting agencies, Diabetes Australia represents one of the leading national funding bodies for diabetes research. Established in 1937, Diabetes Australia is a not-for-profit organisation that operates as a support group and raises funds to invest in research, health services, the provision of self-management products and services, and public awareness programs. Diabetes Australia has also delivered the government’s National Diabetes Services Scheme (NDSS) since its establishment in 1987. Over the past 12 years, Diabetes Australia’s Research Program has invested $36 million into research.[4]
    2. Juvenile Diabetes Research Foundation (JDRF) Australia is the Australian partner in a global alliance that funds research to find a cure for Type 1 diabetes. Since its establishment in the early 1970s, the organisation has invested $226 million in Australian Type 1 diabetes research.[5] In 2010, JDRF established the Type 1 Diabetes Clinical Research Network (T1DCRN) – an initiative that had capitalised on the Australian Government’s continued investment to ‘address research gaps and fast-track breakthroughs across JDRF’s two key research pillars: finding cures and improving lives.’[6]
    3. For patients with Type 1 diabetes, research is ‘the only course of action.’[7] In discussing the work of T1DCRN, JDRF submission emphasised that research ‘holds the key to finding a cure, easing the burden, and preventing T1D [Type 1 diabetes].’[8]The current pace of innovation in the field of diabetes research indeed offers great promise. JDRF noted:

We are on the brink of major advances in T1D research and their implantation into clinical guidelines, clinical care and policy. The T1D field is undergoing rapid changes due to the expansion of our understanding of the trajectory of the disease, better strategies in screening for risk, and new and emerging treatments.[9]

7.9Throughout the inquiry, the Committee received substantial evidence indicating that, despite the increasing rates of diabetes, support for research in this field has steadily declined.[10]

7.10Early Career Network (ENC) of the Australian Diabetes Society (ADS) submitted that NHMRC funding for diabetes research has reduced by 35 per cent since 2013.[11]Professor Jonathan Shaw, Deputy Director at Baker Heart and Diabetes Institute, noted that while some of this decrease would have been countered by MRFF grants, the level of funding overall ‘is below where it should be.’[12] Support from the Diabetes Australia Research Program has also declined from 50 General Grants awarded per year from 2014–21, to 32 in 2022, and 15 in 2023.[13]

7.11The submission from ACADI, which was established in 2022 through a $10 million, four-year MRFF grant, similarly emphasised that ‘Australia has significantly underinvested in diabetes research for many years. This has resulted in an underlying research base that is internationally high performing but […] severely under resourced and at risk of collapse due to a dearth of future researchers.’[14] Although currently producing high quality research with minimal investment, chronic underfunding of the sector has placed the future of diabetes research and innovation at risk.

7.12The ENC submission drew attention to the fact that ‘the current state of funding for diabetes research in Australia sends a message that diabetes research is not a priority for funders.’[15] This sentiment is echoed in the submission from the Westmead Institute’s Centre for Diabetes, Obesity and Endocrinology Research (CDOER), which pointed out that the number of scientific abstracts provided in support of the Australian Diabetes Society Annual Meeting declined by 60 percent between 2012 and 2023. CDOER suggested this decrease indicated that researchers ‘have recognised that the lack of funding in obesity and diabetes research means it is currently a poor career option.’[16]

7.13Basic research, which relies to a significant extent on government funding, is at particular risk. Associate Professor Sofianos Andrikopoulos, Chief Executive Officer of the Australian Diabetes Society, told the Committee:

If you look at the system in a broad sense, basic science is dependent on NHMRC funding, and there aren't that many other opportunities to put grants in to get funding. In diabetes, we are totally reliant on the NHMRC for basic science research support.[17]

7.14The reduction in support has placed a number of laboratories across the country that are engaged in basic science research in diabetes at risk of closing, which further ‘limits the opportunities for basic and clinical researchers to collaborate and accelerate new discoveries.’[18] Professor Josephine Maree Forbes, President-Elect and Chair of Research Advisory Committee of the ADS, emphasised that therapeutic and technical advances made in diabetes in the past two decades were all discovered through basic research, and that underfunding of this area had consequences for the entire research pipeline.[19]

7.15Throughout the course of the inquiry the research community highlighted the need for urgent and targeted investment to support at-risk research infrastructure, as well as a long-term strategic investment in the field of diabetes and obesity research. The Committee heard that while ‘Australia has been punching above its weight’ in diabetes science,[20] greater support for and better coordination of the research effort in this area was urgently required.

Diabetes research workforce

7.16The adverse effect that inadequate levels of funding and the short-term nature of grant schemes have on the diabetes research workforce emerged as a common thread in the inquiry evidence. In reflecting on the future of diabetes research in Australia, Associate Professor Andrikopoulos told the Committee that the insufficient investment in the sector:

is going to have implications for research in diabetes over the next five- to 10-year period. There is no doubt in my mind we will lose good people and we will go backwards in diabetes research. Why is this important? Because we've got all of these new therapies, new interventions, new treatments that are coming and we need to embed them in our health system. The only way we're going to embed these new treatments, new therapies into our system is by doing research in Australia and by supporting diabetes research in Australia.[21]

7.17The erosion of the diabetes research workforce has also been raised as a major concern by Professor Forbes:

we are losing our clinician researchers at a rate of knots, because they just cannot get funding. They have to write 20 grants instead of having to write 10 in the past, because of the success rates in diabetes. Increasingly, we are losing them and they are deciding not to work in diabetes […][22]

7.18In reflecting on the amount of time that researchers spend identifying and applying for a diminishing pool of funds, ACADI Director, Professor Elif Ekinci, told the Committee:

A lot of my valuable time, unfortunately, is still spent on applying for future funding, to secure funding of my staff. It really breaks my heart when we can no longer employ people, after all the years of upskilling people and getting them to the level where they are performing and doing well.[23]

7.19The challenges of securing research funding have a disproportionate impact on PhD candidates and early career researchers (commonly defined as a cohort of researchers who are within five to eight years of receiving their PhD). In its submission to the inquiry ACADI explained:

An important element of research funding is the support it provides for research training in the form of PhD scholarships and early-career fellowships. The paucity of diabetes research funding doesn’t only impact on current research into diabetes and its complications, it narrows opportunities for new researchers to enter the field and make Australian diabetes research a viable, long-term career.[24]

7.20In its analysis of PhD theses completed between 2010 and 2019, ACADI found that the number of diabetes-related PhDs was a quarter of those focused on cancer. Furthermore, less than 25 per cent of PhD graduates manage to secure full-time research careers after completing their postgraduate training.[25] The low number of PhDs focusing on diabetes combined with small portion of PhD graduates from that pool who ultimately find employment in the field underscores the sector’s workforce concerns.

7.21The question of inequity in research careers was also raised with the Committee. ENC noted that funding for research training such as a PhD stipend is financially unattractive compared to other professional opportunities. Research positions, furthermore, tend to be restricted in duration and often require relocation. They demand long and irregular working hours, which is fuelled by a ‘publish or perish’ culture in the academic sector, where an outstanding publication record is a prerequisite for grant funding. This form of employment thus makes research careers viable for only a small pool of scientists.[26]

7.22Researchers who are working outside of academia face additional barriers to accessing funding. ENC explained that significant administrative effort is required to complete grant proposals.[27] Application processes for grants such as the NHMRC or the ARC are indeed notoriously complex, with universities establishing separate research offices to support grant applications made by their staff.[28] Researchers operating outside the university system, such as physicians who train through the Royal Australian College of Physicians (RACP), do not necessarily receive adequate support for developing their research proposals, which hinders their prospects of winning grants.[29]

7.23For junior scientists, failure to secure a grant at the right time often means the end of a research career. Dr Shanal Kumar, endocrinologist at the Prince Charles and Princess Alexandra Hospitals in Brisbane and Chair of the Early Career Network of the Australian Diabetes Society, highlighted:

As a collective, early- and mid-career researchers drive innovation and form the backbone of the research community. […] We seek funding not only for our work but to also secure our professional livelihoods. Over the last decade it’s become increasingly difficult for us to get started and keep going if we miss out on funding.[30]

Diabetes research ecosystem

7.24Fragmentation of the diabetes research sector in Australia has been identified as an additional impediment to diabetes research in Australia. ‘Traditionally, diabetes research in Australia has been highly siloed,’ the ACADI submission noted, ‘with multiple areas of world-class research isolated in pockets of expertise across numerous universities and research institutes.’[31] This fragmentation of expertise, ACADI added, and the highly competitive nature of research funding, has hindered the articulation of a collaborative and coordinated research strategy for diabetes.

7.25Entities such as ENC and Research Australia, a national alliance representing the health and medical research sector, proposed the establishment of a national research agenda for diabetes that would provide a ‘clear consensus on areas of diabetes research priorities.’[32] Research Australia submitted that:

While it is certainly true that there is existing funding for diabetes research from several sources, there is currently no body that can coordinate diabetes research funding across different funding bodies, or coordinate funding along the pipeline from basic research to implementation.[33]

7.26Research Australia also explained that outcomes of major research funding streams in Australia such as NHMRC and MRFF, are investigator led: in their grant applications, researchers propose the area in which they wish to undertake work, and the application is then assessed based on the quality and novelty of research, feasibility, and the capacity and track record of researchers. This model presents significant challenge for the coordination of research efforts:

Responsibility for the existing funding streams (NHMRC MRFF etc.) rest with different individuals and entities which have their own strategies and agendas; this makes coordination of the funding they provide for diabetes research by any one body difficult but also essential if the potential of research to improve lives is to be realised.[34]

7.27Research Australia drew the Committee’s attention to entities such as Cancer Australia, which was established by the Australian Government in 2006 with the aim of coordinating research and other activities to achieve optimal outcomes in diagnosing and treating cancer.[35] There is a broad consensus across the inquiry evidence that a similar coordinating entity in the field of diabetes research would be beneficial.

7.28The establishment of the Australian Centre for Disease Control (CDC) has also been identified in the evidence as an opportunity for introducing a more coordinated approach to diabetes research.

7.29In 2022, the Government undertook consultation on the establishment of the CDC in order to improve the country’s response and preparedness for public health emergencies. In addition to ensuring ongoing pandemic preparedness, CDC will also lead national response to future health emergencies and prevent and control non-communicable and communicable (infectious) diseases. Research Australia submitted that although research was not envisaged as part of the role of the Australian CDC, the Centre is well positioned to ‘undertake the function of coordinating the application of research to the prevention and control of disease, including diabetes.’[36]

Diabetes datasets

7.30Collection of comprehensive data on diabetes in Australia is vital both for the advancement of research, and the ability to measure progress of government initiatives in this field, such as the National Diabetes Strategy.

7.31The National Diabetes Services Scheme (NDSS), through which diabetes patients register in order to access services and subsidised diabetes products, is one of the most significant data sources for the sector.

7.32The Australian Institute of Health and Welfare (AIHW) – an independent statutory government agency for health and welfare data – also holds a number of data collections on diabetes and obesity. AIHW’s National (insulin-treated) Diabetes Register, for examples, records all new cases of people using insulin since 1 January 1999, combining data from the NDSS and the Australasian Paediatric Endocrine Group state and territory registers.[37]

7.33The Australasian Diabetes Data Network (ADDN) is a platform that has been established as part of JDRF’s Type 1 Diabetes Clinical Research Network. ADDN captures clinical information from thousands of people living with Type 1 diabetes, bringing together de-identified data from 25 centres across Australia and New Zealand onto a single platform.[38]

7.34The Australian Medical Association submitted that there was a critical need for improving our current data collection on diabetes.[39] This position is further emphasised by ACADI, with its submission noting that major datasets such as NDSS and AIHW are flawed:

The NDSS data relies on people who are registered with the Service, and not all people with Type 2 diabetes have registered. Additionally, AIHW data audits have found issues in the correct classification of people with Type 1 versus Type 2 diabetes.[40]

7.35In his appearance before the Committee, Professor Shaw of the Baker Heart and Diabetes Institute explained that the limitations of NDSS stem for its profile as a service rather than a registry:

NDSS is effectively almost a register of people with diabetes and gives us, effectively, the largest national register of diabetes, except that it's designed as a service and hasn't quite been set up as a registry. We've done a lot of academic work and published a lot of data on it, but it just falls this much short of what a registry should be.[41]

7.36The limitations of NDSS data are particularly evident in areas such as the Northern Territory. Aboriginal and Torres Strait Islander people often do not register with the NDSS; furthermore, many people access diabetes supplies directly from a clinic rather than through NDSS registration, resulting in underrepresentation of diabetes patients within this dataset.[42]

7.37In discussing limitations of diabetes-related datasets held by the AIHW, ACADI cited the example of the National Hospital Morbidity Database, in which diabetes is recorded as an additional diagnostic rather than a causal condition in around 95 per cent of hospitalisations that mention diabetes.[43] Where deaths occur in people with diabetes, the cause of death is usually listed as some other event (for example, a cardiovascular event) rather than diabetes. The nature of reporting of hospital presentations and mortality may thus provide distorted data on the impact of diabetes:

Under-reporting the significance of diabetes as a primary cause of hospitalisation, disease and death through the data captured by our health system entrenches the misunderstanding of the causes, complexity and severity of diabetes and its treatment – and the associated costs. It also results in the minimisation of the impact of diabetes on individuals and the health system and potentially results in less funding for prevention, diagnosis, and research.[44]

7.38Dr Kumar also emphasised that diabetes was often overshadowed by its complications in reporting, which has implications for funding:

The diabetes complications involve cardiovascular complications and other complications, and I don’t think that we always capture that it’s secondary to diabetes. So it’s not the primary cause. How we can fix that is by having diabetes-specific research funding.[45]

7.39ACADI recommended recording diabetes as the cause of more illness and death instances instead of ascribing these to other principal events.[46] The Royal Melbourne Hospital, for example, suggested including ‘diabetes status’ as a mandated field for every person admitted to hospital and on death certificates in every state and territory.[47] These practices would provide a foundation for the development of a more accurate and comprehensive dataset, and by extension a more accurate understanding of diabetes in Australia.

7.40Research Australia further emphasised that the lack of adequate diabetes-related data presented a significant problem for measuring the effectiveness of diabetes-related programs and initiatives.[48] In reflecting on the National Diabetes Strategy 2016-2020, Research Australia noted that the AIHW was unable to provide measures for 20 out of 55 indicators designed to track the effectiveness of the Strategy.[49]

7.41This problem was reiterated by Dr Matthew Hare, Senior Research Fellow at the Menzies School of Health Research who told the Committee that:

For example, the 2021 to 2030 National Diabetes Strategy is a fantastic resource, and it's got some great goals, but what we need to see in the implementation plan when it's refreshed from the previous version are some actual targets and metrics to report against. For example, for diabetes in pregnancy goal 4 in the previous Diabetes Strategy there were no metrics provided in the implementation strategy because there were no data sources identified to report against. With investment, which I think is goal 7 of the strategy, in data sources and these things we can actually provide quite a bit more impetus to actually make these changes to policies nationally.[50]

7.42Research Australia submitted that the AIHW should review the indicators for the purpose of the current National Diabetes Strategy 2021–2030, and advise on the new data collections that are required in order to accurately track the progress of the Strategy.

7.43ENC identified that some of the current issues hindering better collection of data owe to a lack of electronic medical record systems at some services; an inability to share data between community and hospital-based facilities; and an inability to share data with private pathology and radiology services.[51]

7.44In discussing the collection of health data, Dr Jason King, Director of Clinical Services, Gurriny Yealamucka Health Service Aboriginal Corporation, drew the Committee’s attention to the importance of understanding contemporary notions of data sovereignty when dealing with health records, especially in relation to Indigenous Australians:

The collection of data from Aboriginal communities has been an issue since colonisation in the 19th century or 18th century, when artefacts, remains […] were taken away and never returned. Health data is no different. Health data needs to be something that is obtained with consent, and then the people who hold that data need to see themselves as custodians. The communities need to have ownership of that, primarily, and give permission to be able to use it. I think that's increasingly a factor which health research needs to understand, particularly primary health, which is so intimately connected with communities.[52]

7.45In addition to better data, many of those who provided evidence in support of the inquiry identified a need for developing data linkage methods and information sharing platforms for the diabetes sector.

7.46In its submission, ACADI noted that are many good examples in Australia of platforms that bring together disparate research strands in some particular field under one umbrella, such as the Peter Doherty Institute for Infection and Immunity, the Florey Institute of Neuroscience and Mental Health, the Olivia Newton-John Cancer Research Institute and the Victor Chang Cardiac Research Institute.[53] Virtual platforms that link different entities working in the same research area – which is the logic underpinning ACADI’s establishment – can go a long way toward addressing the fragmentation of the research sector, including in respect of data collection.

Research co-design

7.47In the course of the inquiry, the Committee investigated the question of research translation in Australia. In this context, the importance of co-design in diabetes research has been strongly emphasised. Participation by people with diabetes should occur in a significant proportion of all research projects relating to diabetes, ‘from basic research into the causes of diabetes to consumer-directed product development.’[54]

7.48In registering his support for investment in diabetes prevention research, Associate Professor Freya MacMillan, Board Director of the Australian Health Promotion Association, highlighted that policies, programs and strategies to prevent diabetes must be tailored to their local context. She explained that:

it's paramount that communities and those with lived experience are central to the co-design and co-delivery of the programs that will then maximise engagement and effectiveness.[55]

7.49Participation of Indigenous communities in the development and delivery of diabetes research projects is particularly important. ACADI submitted that:

Researching the First Nations experience of diabetes and its management must be seated within cultural context and First Nations ownership of the research lifecycle. For example, ACADI operates with an embedded Indigenous Advisory Group, ensuring that First Nations People are consulted on new projects and initiatives and their lived experience of diabetes is an integral part of the research design.[56]

7.50In reflecting on the impact of diabetes research in the Northern Territory and remote Australia, Professor Alan Cass, Director of Menzies School of Health Research, similarly emphasised the importance of building research collaboration with communities:

I think it's place-based strong collaborations like those evidenced here, working with communities and community controlled services where the patient or consumer voice is upfront, that make a difference. […] I think that's about addressing issues of the highest priority with the right community members and Aboriginal and non-Aboriginal researchers coming together in deep partnership with health services and government, and able to enunciate and show the likelihood of impact.[57]

7.51Ms Ema Vueti, President of the Pacific Islands Council of Queensland, also discussed participatory approach in research, and highlighted the example of Pacific communities that have been involved in diabetes management research and education conducted through the Pasifika Women’s Alliance and the Queensland University of Technology to ensure better health outcomes for these cohorts.[58]

7.52In addition to placing the voices of those living with diabetes at the centre of research design, the inquiry evidence also makes it apparent that there is a need for closer collaboration between research centres and primary care providers. As Professor Cass explained:

I think we as a country have been much better at funding research and building research capability within big universities, research institutes and hospitals. Still, the ability for primary care—community controlled, government services and GPs—to step up and partner in research that will make a difference in the community in the prevention and management of diabetes and related chronic disease is still terribly limited.[59]

The future of diabetes research

7.53The advances made in the field of diabetes research to date have had an enormous impact on the lives of people living with the disease. In appearing before the Committee, Miss Emily Klimek, volunteer advocate at JDRF, reflected:

research has made it possible for many people like me to live a happy and productive life. I am grateful for the research that went into the insulin pump and continuous glucose monitor, my CGM, that I wear 24/7. It really helps me to manage my type 1, and I am very grateful for the bipartisan commitment so that the CGM is accessible to all. But most of all I look forward to the day when I can say I used to have type 1 diabetes, I am now needle and anxiety free and I can live a long and happy life. I think that with the research and the partnership with JDRF that will one day be accessible.[60]

7.54The quest for more sophisticated methods of diabetes detection and management, along with efforts to find a cure for the disease, remains at the frontier of diabetes research.

7.55The Department of Health and Aged Care highlighted the importance of advancing precision medicine in the field of diabetes:

Personalised approach to the management of diabetes involves optimising the diagnosis, prediction, prevention, and treatment of diabetes. This is achieved by integrating multi-dimensional scientific and clinical data and applying to individual patient profiles by accounting for the individual’s health status.[61]

7.56JDRF similarly emphasised the importance of precision medicine in the context of Type 1 diabetes, noting that advancement in this area:

…will allow us to develop a broader understanding of personalised treatment, to not only encompass the biological bases of T1D heterogeneity, but also psychosocial and personal preferences within a patient-centric model.[62]

7.57In addition, the application of nanotechnology holds great promise in diabetes management. The Department of Health and Aged Care explained that ‘nanotechnology is utilised in the application of drugs or diagnostic molecules which generally improves their ability to target specific cells or tissues.’[63] According to the Department, ‘Novel nanotechnology-based glucose measurement and insulin delivery techniques are increasingly being used in the field of diabetes,’ in order to improve ‘the overall treatment outcome in diabetes.’[64]

7.58Better understanding of the genetic architecture for both Type 1 and Type 2 diabetes will continue to be a major focus of research, as will the interplay between genetics and external factors. Research into, for example, the relationship between the genetic component and viruses in triggering diabetes is currently underway;[65] equally the question as to why some individuals at risk for Type 2 diabetes develop the disease and others do not will likely be answered with further knowledge of our genetics.[66]

7.59Research related to the prevention of diabetes and its potential remission will remain important, including the work on the effect of a low-carbohydrate diet and physical activity.[67] Diabetes, as witnesses repeatedly highlighted during the inquiry, is a complex multiorgan disease, with a range of complications and focus should be on research that acknowledges that complexity. As Professor Cass explained:

People will have kidney disease, diabetes, vascular disease and everything together, so encouraging the very multidisciplinary and cross-organ—not organ-specific—approach will have the maximal chance of difference. We're getting better at directing research that way.[68]

7.60The establishment of a clinical research network for diabetes will also be vital for future diabetes research in Australia. ACADI submitted that clinical trials ‘are a critical step in the research and development process for new drugs, vaccines, medical devices, and diagnostics.’[69] As Professor Ekinci explained to the Committee: ‘In order to change practice—observational studies are not going to do it. You need clinical trial evidence.’[70]

7.61Clinical trials also provide early access to potentially life-changing new treatments. Currently diabetes clinical trial activity exists in isolated pockets, concentrated primarily in metropolitan areas on the eastern seaboard.[71] A coordinated clinical trial activity to provide access to clinical trials of the newest technologies, medications or behaviour interventions for people living with diabetes will be vital for the future of research and research translation in diabetes.

Committee comment

7.62The Committee learned that Australian scientists are currently making ground-breaking advancements in the field of diabetes and obesity research. This work is vital for developing a better understanding of the causes of diabetes, for devising better screening and treatment approaches, and for creating pathways to reach the ultimate goal of finding a cure for the disease.

7.63The Committee acknowledges the importance of embedding the experiences of people living with diabetes within the research process, and welcomes the commitment to this practice across the Australian research sector.

7.64Australia’s ability to maintain and build research capacity in the field of diabetes is a cause of great concern among the research community. The Committee acknowledges that the level of funding ought to better reflect the burden of diabetes and that short-term nature of funding models hinders the sector’s ability to deliver best research outcomes and support the research workforce now and into the future.

7.65The urgent need for better coordination of diabetes-related research effort is also a clear priority. The Committee recognises that entities such as the Australian Centre for Disease Control can play a leading role in streamlining current research efforts.

Recommendation 21

7.66The Committee recommends that the Australian Government takes steps to manage diabetes research efforts through the Australian Centre for Disease Control (CDC) by coordinating with the peak bodies such as JDRF and Diabetes Australia research priorities with an emphasis on equitable access and prevention. The Committee also recommends that the Australian Government considers increased funding for Type 1 diabetes research and clinical trials.

7.67The short-term nature of funding schemes and the fragmentation of the diabetes research ecosystem in Australia has had an adverse effect on research productivity. Placing diabetes-related research efforts under the coordination of the Australian CDC would address the issue of fragmentation, while also providing the opportunity to articulate a long-term diabetes research strategy.

Recommendation 22

7.68The Committee recommends that the Australian Government undertakes a survey of current diabetes-related data, with a view to developing strategies for establishing new and improving current data sources and for establishing a national diabetes mellitus register within the CDC.

7.69Data is central to research, as well as being the foundation for measuring the success of current national strategies related to diabetes and obesity. Data is also vital for understanding the impact of diabetes on both our health system and the national economy.

Footnotes

[1]Australian Centre for Accelerating Diabetes Innovations (ACADI), Submission 316, p. 2.

[2]Department of Health and Aged Care, Submission 152, p. 7.

[3]Department of Health and Aged Care, Submission 152, p. 7.

[4]Diabetes Australia, Research, accessed 6 June 2024, www.diabetesaustralia.com.au/research/

[5]JDRF Australia, About JDRF, accessed 6 June 2024, https://jdrf.org.au/about-us/

[6]JDRF Australia, Type 1 Diabetes Clinical Research Network: a decade of impact, July 2023, p. 4.

[7]Mrs Melissa Eveille, Advocacy Program Manager, JDRF Australia, Committee Hansard, Canberra, 16 February 2024, p. 22.

[8]JDRF Australia, Submission 64.1, p. 2.

[9]JDRF Australia, Submission 64.1, p. 2.

[10]See, for example, Early Career Network (ENC) of the Australian Diabetes Society (ADS), Submission 225; ACADI, Submission 316; Centre for Diabetes, Obesity and Endocrinology Research (CDOER), Submission 157; Associate Professor Milan Piya, Clinical Academic Endocrinologist, Campbelltown Hospital, Committee Hansard, Campbelltown, 18 September 2023, p. 26.

[11]ENC ADS, Submission 225, p. 2.

[12]Professor Jonathan Shaw, Deputy Director, Clinical and Population Health, Baker Heart and Diabetes Institute, Committee Hansard, Melbourne, 23 November 2023, p. 37.

[13]ENC ADS, Submission 225, p. 2.

[14]ACADI, Submission 316, p. 2.

[15]ENC ADS, Submission 225, p. 2.

[16]CDOER, Submission 157, p. 8.

[17]Associate Professor Sofianos Andrikopoulos, Chief Executive Officer, ADS, Committee Hansard, Canberra, 16 February 2024, p. 33

[18]ENC ADS, Submission 225, p. 4.

[19]Professor Josephine Maree Forbes, President-Elect and Chair of Research Advisory Committee, ADS, Committee Hansard, Canberra, 16 February 2024, p. 29.

[20]Professor Anthony Russell, President, ADS, Committee Hansard, Canberra, 16 February 2024, p. 32.

[21]Associate Professor Andrikopoulos, ADS, Committee Hansard, Canberra, 16 February 2024, p. 33.

[22]Professor Forbes, ADS, Committee Hansard, Canberra, 16 February 2024, p. 33.

[23]Professor Elif Ekinci, Director, ACADI, CommitteeHansard, Canberra, 22 March 2024, p. 38.

[24]ACADI, Submission 316, p. 5.

[25]ACADI, Submission 316, p. 5.

[26]ENC ADS, Submission 225.

[27]ENC ADS, Submission 225, p. 3.

[28]See, for example: House of Representatives Standing Committee on Employment, Education and Training, Australian Government Funding Arrangements for non-NHMRC Research, 2018.

[29]ENC ADS, Submission 225, p. 3.

[30]Dr Shanal Kumar, Private capacity, Committee Hansard, Brisbane, 20 November 2023, pp. 36–37.

[31]ACADI, Submission 316, p. 4.

[32]ENC ADS, Submission 225, p. 6.

[33]Research Australia, Submission 335, p. 10.

[34]Research Australia, Submission 335, p. 10.

[35]Research Australia, Submission 335, p. 13.

[36]Research Australia, Submission 335, p. 15.

[37]Australian Institute of Health and Welfare (AIHW), Our data collections, accessed 6 June 2024, www.aihw.gov.au/about-our-data/our-data-collections. The collection of APEG data ceased in 2022; since then, the National Diabetes Register has been derived only from the NDSS.

[38]JDRF, The Australasian Diabetes Data Network (ADDN), accessed 6 June 2024, https://jdrf.org.au/research/addn/

[39]Australian Medical Association, Submission 219, p. 3.

[40]ACADI, Submission 316, p. 1.

[41]Professor Shaw, Baker Heart and Diabetes Institute, Committee Hansard, Melbourne, 23 November 2023, p.37.

[42]Dr Matthew Hare, Senior Research Fellow, Menzies School of Health Research, Committee Hansard, Darwin, 7 March 2024, pp. 18–19.

[43]ACADI, Submission 316, pp. 1–2.

[44]ACADI, Submission 316, p. 2.

[45]Dr Kumar, Committee Hansard, Brisbane, 20 November 2023, p. 37.

[46]ACADI, Submission 316, p. 2.

[47]The Royal Melbourne Hospital, Submission 295, pp. 2–3.

[48]Research Australia, Submission 335, pp. 5–8.

[49]Research Australia, Submission 335, p. 6.

[50]Dr Hare, Menzies School of Health Research, Committee Hansard, Darwin, 7 March 2024, p. 25.

[51]ENC ADS, Submission 225, p. 7.

[52]Dr Jason King, Director of Clinical Services, Gurriny Yealamucka Health Service Aboriginal Corporation, Committee Hansard, Yarrabah, 21 November 2023, p. 6.

[53]ACADI, Submission 316, p. 4.

[54]ACADI, Submission 316, p. 5.

[55]Associate Professor Freya MacMillan, Board Director, Australian Health Promotion Association, Committee Hansard, Canberra, 16 February 2024, p. 15.

[56]ACADI, Submission 316, p. 7.

[57]Professor Alan Cass, Director, Menzies School of Health Research, Committee Hansard, Darwin, 7 March 2024, p. 28.

[58]Ema Vueti, President, Pacific Islands Council of Queensland, Committee Hansard, Brisbane, 20 November 2023, p. 53.

[59]Professor Cass, Menzies School of Health Research, Committee Hansard, Darwin, 7 March 2024, p. 29.

[60]Miss Emily Klimek, Volunteer Advocate, JDRF Australia, Committee Hansard, Canberra, 20 June 2023, p.13.

[61]Department of Health and Aged Care, Submission 152, p. 9.

[62]JDRF Australia, Submission 64.1, p. 2.

[63]Department of Health and Aged Care, Submission 152, p. 9.

[64]Department of Health and Aged Care, Submission 152, pp. 9–10.

[65]Dr Dorota Pawlak, Chief Scientific Officer and Director, Type 1 Diabetes Clinical Research Network, JDRF Australia, Committee Hansard, Canberra, 20 June 2023, p. 14; Department of Health and Aged Care, Submission 152, p. 6.

[66]Dr Lisa Amato, Paediatric Endocrinologist, Campbelltown Hospital, Committee Hansard, Campbelltown, 18September 2023, p. 31.

[67]Dr Liz Fraser, Private capacity, Committee Hansard, Canberra, 17 November 2023, p. 30.

[68]Professor Cass, Menzies School of Health Research, Committee Hansard, Darwin, 7 March 2024, p. 28.

[69]ACADI, Submission 316, p. 4.

[70]Professor Ekinci, ACADI, Committee Hansard, Canberra, 22 March 2024, p. 41.

[71]ACADI, Submission 316, p. 4.