Diabetes Research Matters: A Three-Round Priority-Setting Survey Consultation with Adults Living with Diabetes and Family Members in Australia

Diabetes is a global health priority, presenting a significant challenge to the health and well-being of individuals living with the condition, their families and societies [1, 2]. In Australia, more than 1.5 million people have diabetes, with around 9% with type 1 diabetes (T1D), 85% with type 2 diabetes (T2D) and 3% with gestational diabetes mellitus (GDM) [3]. In 2018–19, the direct diabetes costs to the Australian health system were estimated at $3 billion, with 40% spent on hospital services [4]. Australian diabetes research is funded mostly by government bodies (e.g. National Health and Medical Research Council, Medical Research Future Fund [5]) and peak organisations (e.g. Juvenile Diabetes Research Foundation, Diabetes Australia). Over the past decade, the National Health and Medical Research Council funding for diabetes research exceeded AUD$500 million (~9% total funding) [6]. To date, the Medical Research Future Fund has invested more than AUD$100 million in diabetes research projects [7]. However, in Australia [8, 9] and worldwide, diabetes research remains underfunded, relative to some other conditions [10‐12], and particularly so for behavioural and psychosocial research [13]. Thus, it is imperative that limited research funding responds directly to the needs and interests of the community living with diabetes. In contrast, a disparity may exist between funded research and the priorities of those with the condition [14].

Traditionally, health research agendas are set by policy makers, informed by ‘experts’ (researchers, clinicians, funding bodies, peak bodies, industry), based on gaps in scientific evidence, established through evidence reviews. However, the past two decades have seen a growing recognition of the importance of including the views of those with lived experience of a condition, in defining research agendas and improving health services. The Australian National Health and Medical Research Council 2016 statement on ‘consumer and community involvement’ (CCI) recognises that the community can “add value to health and medical research, and they have the right and responsibility to do so” [15]. Similar guidance has been published by funding bodies and health organisations elsewhere, and a key consideration for CCI includes the provision of input into the formulation and development of research questions [16].

People with diabetes and family members or carers can make a significant contribution to identify and prioritise relevant research topics, as well as how the research is conducted [17, 18]. Their involvement may lead to a more appropriate allocation of limited research funding, enhanced research engagement and participant retention, as well as the development, implementation and uptake of more relevant, effective and acceptable interventions. A review exploring the benefits of CCI in diabetes research found that the lived experiences of people with diabetes were instrumental in developing and conducting relevant and accessible interventions for diabetes self-management [17]. Shared ownership (i.e. reciprocal relationships between researchers, people with diabetes and the wider community) was associated with high retention and stakeholder engagement.

While several diabetes research priority-setting activities have been undertaken to date, and outcomes published, the level of CCI is variable [19‐25]. In the UK, the James Lind Alliance (JLA) has established the research priorities of people with T1D [20], T2D [23] and women experiencing diabetes (T1D, T2D or GDM) during pregnancy [19]. These studies have drawn on large samples of the community with lived experience as well as carers to inform and prioritise research questions, in addition to inviting clinician input and agreement, and the validation of priorities against the existing literature. Identified priorities (across cohorts) relate to the prevention and successful management of diabetes (including treatments and technologies), prevention of complications and the role of emotional well-being. These stakeholder initiatives have informed the Diabetes UK research strategy, including dedicated research funding calls [26]. However, findings from consultations in the UK cannot be assumed to be relevant to the Australian (nor other international) contexts owing, for example, to differences in the healthcare systems, access to and subsidies for treatments, diversity in population ethnicities and underserved groups. In Australia, limited prioritisation of diabetes research questions has been conducted. For example, one study established a list of the top ten research questions to improve diabetes-related foot health utilising a Delphi method inviting both community and clinician perspectives [25]. Thus, there remains a need for a comprehensive view of community perspectives on diabetes research priorities. Further, it is likely that priority research questions differ between clinicians and those with lived experience [24], and a greater focus on CCI in the elicitation of research priorities, without required agreement with clinicians or other stakeholders, is warranted.

Thus, to shape the Australian diabetes research agenda for the next decade, it is crucial to engage people living with diabetes and their family members to identify salient and applied research questions. Understanding what matters to Australians with diabetes has the potential to influence recommendations for future impactful research to address unmet needs. Through stakeholder consultations with adults with diabetes and family members, we aimed to identify research priorities they consider important for improving the health and quality of life of Australians with diabetes.

In total, 661 participants completed Survey 1 (83% of target sample; ESM), including 302 participants with T1D (46% using insulin pump or commercial/self-built closed loop; living with diabetes for a mean ± standard deviation of 23 ± 17 years), 204 participants with T2D (29% insulin-treated; diabetes duration: 14 ± 9 years), 58 women with experience of GDM (77% not currently pregnant with GDM; among those with a current GDM diagnosis, 53% insulin treated), 22 participants with less common diabetes types (64% insulin treated, diabetes duration: 13 ± 13 years) and 75 FM (69% a parent to someone with diabetes; 87% a FM to person with T1D). All states and territories were represented (Table 1). Most participants (n = 434; 66%) reported accessing the survey via an NDSS direct invitation (~ 2% response rate).

Through a rigorous and iterative research design, involving guidance from a community steering group, this study identified the research priorities of adults living with (all types of) diabetes and their FM in Australia. This study generated 127 unique research questions (125 from Survey 1, plus two further identified in Survey 2), covering 25 broad research topic areas, considered important by the community for a better life with diabetes. The volume of research questions and topics identified (all prioritised by at least one participant in Survey 2), as well as the relatively small observed differences in rankings (weighted scores in Survey 3) suggest diverse research interests and unmet needs. Taken together, these findings indicate that people living with or affected by diabetes in Australia believe that better health and quality of life could be achieved through research designed to reduce the everyday burden of living with diabetes. Substantial divergence in the prioritised research questions of adults with T1D, T2D and GDM, and their FM, supports the need for cohort-specific research agendas (with exceptions discussed below).

For participants with T1D (and FM), the highest ranked research priority focused on investigating how glucose monitoring and insulin-delivery technologies can be improved to reduce the burden of managing diabetes. In addition to effectiveness, participants suggested that research should focus on how technologies can make diabetes management easier and how technologies can be better integrated, more environmentally friendly and/or more accessible. Similar findings were observed in the UK JLA process, whereby the top three T1D research priorities referred to the availability of discrete continuous glucose monitors and the effectiveness of insulin pump devices and closed loop systems [20]. However, Australians with T1D also prioritised research to reduce the financial burden of diabetes through increased, timely and affordable access to advanced technologies, likely reflecting the local health system. Relatedly, the International Diabetes Federation have highlighted universal access to insulin pumps and continuous glucose monitors as one of four key interventions that could reduce the negative impacts of T1D worldwide [31]. Alongside mounting scientific evidence for the clinical and psychosocial benefits of advanced technologies in the management of T1D [32, 33], the research priority setting illustrates strong community interest in continued research efforts to improve device effectiveness, convenience, acceptability and accessibility.

Commonality was observed between priorities for those with T1D and FM, with six consistently reported priorities across the two cohorts. This might be expected given that the latter cohort largely reported being parents to someone with T1D. For example, both cohorts prioritised research into raising the public awareness of diabetes, including the differences in diabetes types, their causes, symptoms and treatments. This is consistent with the findings of a recent World Health Organization key informant survey, which identified perceived needs for the media to differentiate between diabetes types, and for an increased awareness of the signs and symptoms of T1D [34]. Current study participants with T1D and FM suggested that a greater public awareness could also enable improved first-aid response to those experiencing severe hypoglycaemia. In contrast to those with T1D, FM also prioritised, for example, research aimed at increasing support in schools for children with T1D, as well as improvements to early diabetes screening.

Among participants with T2D, the highest ranked research priority focused on the reversal of insulin resistance, with several other priorities seeking to identify the most effective diets, exercise plans and supports to achieve T2D remission and/or weight loss consistent with the research priorities of adults with T2D in the UK [23]. Increasing evidence suggests T2D remission (i.e. reduction in HbA1c to ≤ 6.5% without the use of glucose-lowering medications) is possible for some when adopting an intensive weight management programme following diagnosis [35‐37]. Such findings have garnered widespread scientific, health and media attention, as well as apparent interest from the broader T2D community. Qualitative responses to Survey 1 suggested some participants did not understand what T2D remission is or involves. Further, average T2D duration and medication status (29% insulin treated) indicate remission may not be achievable or sustainable for most participants with T2D in the current study [38]. Thus, there is a clear need for and interest in greater communication and education about T2D remission, in addition to research on this topic.

Participants with GDM prioritised research that seeks to better understand the impacts of diabetes on their child (during pregnancy and in the long term). Prior qualitative research among those with GDM has commonly identified heightened fear and health concerns for their child [39, 40]. However, investigation and minimisation of risks to the child were ranked 4th and 11th, respectively, in previous Canadian and UK priority-setting exercises. [19, 22] This point of difference in research priority ranking may be because of the small Australian sample from which GDM research priorities are drawn, the different methods used and/or stakeholders consulted. Consistencies in GDM research priorities across the current Australian, UK and Canadian research priorities include: prevention of future T2D diabetes, mental health and emotional well-being, as well as diet and physical activity [19, 22]. Among the small cohort of participants with less common types of diabetes, prioritised research related to the association of diabetes with other conditions (also prioritised by T1D cohort), as well as the need for improved screening, diagnosis and management of latent autoimmune diabetes in adults and maturity onset diabetes of the young, including increased awareness among health professionals of these types of diabetes.

Investigation of ‘the causes or triggers of diabetes …’ was the only consistently prioritised research question across all cohorts, though not ranked first for any cohort. Despite differing aetiologies, this may reflect the shared complexity, and still limited understanding of the causes, of all types of diabetes. Qualitative responses in Survey 1 indicated that such knowledge gains would ultimately assist in finding a cure for or enable prevention of diabetes. Indeed, research focused on a diabetes cure was also a priority for all cohorts (except GDM), despite Survey 1 question wording specifically asking for research questions beyond that of a cure. Research relating to either prevention or remission was also prioritised across cohorts. Some participants reported seeking a better understanding of the extent to which their diabetes may have been caused by their behaviours (vs factors such as genetics, ageing and the environment). Other research demonstrates that beliefs and attributions about the causes of diabetes (e.g. perceived control/personal responsibility) [41] are associated with internalisation of diabetes stigma by people living with T2D and GDM [42], and has a detrimental impact on public support for funding diabetes healthcare and research [43]. Thus, there is need for careful consideration of how evidence about the causes of diabetes is communicated to support optimal self-management and raise awareness of diabetes risk factors, without perpetuating stigma and its harmful effects [44].

Researchers may use the current study findings to drive a community-informed research programme. It is also hoped that these findings would inform future research funding calls in Australia, as has been seen in the UK following community research priority setting [26]. While some commonality in priorities is observed [19‐25], the relevance of these research questions to community needs and interests within other countries (as well as under-represented sub-populations within Australia and the UK) warrants investigation, with consideration given to the value and appropriateness of a global community-informed diabetes research agenda.

For many of the identified research priorities, published evidence exists. Prioritisation of such research questions among the diabetes community suggests that this evidence may not be disseminated clearly or implemented appropriately (e.g. within healthcare services). Thus, in addition to addressing the community-identified evidence gaps, processes are needed to improve the dissemination and implementation of research findings. Broad public communication of research findings is an ethical responsibility of researchers [45] and a strategic priority of peak bodies [46]. Together, there is opportunity for researchers and diabetes organisations to deliver effective communications tailored to the research questions prioritised by the community. To commence this work, a lay report has been published to communicate findings with the community and be used for further consultations with diabetes organisations and funding bodies. The report can be accessed via the study-specific website (diabetesresearchmatters.com), where future dissemination initiatives will be posted. Beyond this study, and the Australian context, there remains a need for greater attention to investment and CCI in the communication and implementation of diabetes research.

Through a systematic iterative consultation process, we report the cohort-specific research priorities of adults with T1D, T2D, GDM, less common diabetes types and FM in Australia, with only one common priority identified across groups. Within cohorts, the differences in perceived importance between the top priorities are minimal, supporting the need for investment in diverse research programmes to reduce the diabetes burden. Respecting the needs and interests of community, these findings can be used to shape the future research agenda of Australian funding bodies and researchers, and to inform community-focused research dissemination strategies. Further, given the consistency of results with similar priority-setting initiatives in the UK, study findings may have broader relevance with the opportunity to inform international diabetes research funding calls and collaborations.