The European Diabetes Forum
Diabetes in Europe has become a rapidly accelerating public health crisis. That is why the EASD and other major stakeholders have come together to form the European Diabetes Forum, which aims to translate research and best practice into policy that will achieve better diabetes care for people in Europe. A recent article in Diabetologia introduces the Forum and its strategic plans on integrated care, data and registries, and digital diabetes and self-management. Dr Susan Aldridge reports.
Professor Chantal Mathieu, President of EASD, and her colleagues introduce the European Diabetes Forum (EUDF) by explaining why the initiative is so necessary at this time. They describe diabetes in Europe as “an emergency hiding in plain sight”. One person in 11 (61 million people) lives with diabetes in Europe today. That is more than the population of Italy. Worse still, there is no sign of this public health crisis slowing down, for diabetes prevalence in the European region is set to grow by a further 13% by 2045, according to the latest data from the International Diabetes Federation (IDF).
In a statement that will strike a chord with all those who live with diabetes, the authors go on to say: “Diabetes remains one of the most undertreated and underestimated of all common medical conditions. Society has no real sense of what living with diabetes means: the sheer scale of the health indicators one must constantly track and trace; the omnipresent threat of complications; the fear and anxiety about the future.”
People with diabetes suffered disproportionately during the COVID-19 pandemic, being more likely to be hospitalised or die from the infection, as well as missing out on their regular health checks during lockdown. Diabetes also has a severe impact on healthcare economies, with an annual expenditure of around €170 billion. Indirect costs include decreased productivity, sick leave, disability, early retirement and premature death.
Meanwhile, type 2 diabetes is increasingly affecting people at a younger age, and young-onset diabetes is more aggressive. Furthermore, IDF data shows that the Europe region has the highest number of children and adolescents with type 1 diabetes, with a total of 295,000.
Faced with this enormous challenge, the scientific and medical communities, and people with diabetes themselves, have of course approached policy makers. But they do so from different angles, which tends to dilute the overall message, leading to policy inertia rather than the urgent action that is needed, according to the authors.
The European Diabetes Forum
The EUDF emerged after several years of preparation and research by Dr John Nolan of EASD and was founded in 2019 as a non-profit organisation under Belgian law by the following organisations: EASD, EFSD (European Foundation for the Study of Diabetes), FEND (Federation of European Nurses in Diabetes) and JDRF (Juvenile Diabetes Research Foundation). After the launch, PDCE (Primary Care Diabetes Europe), SFD (Société Francophone du Diabète) IDF Europe and ISPAD (International Society for Pediatric and Adolescent Diabetes) joined as members. EUDF also has a number of pharmaceutical and medical technology companies as supporting collaborators.
The EUDF is a platform for bringing together stakeholders from across the European diabetes landscape to present a harmonised voice on the diabetes community’s needs to governments, regulators, payers and others. During the pandemic, non-communicable diseases like diabetes got less political attention. So EUDF action may be even more critical during the post-pandemic era to help push diabetes care back up the agenda.
The mission of EUDF is “to ensure the translation of research and clinical evidence into policy actions towards better diabetes care at a national level.” As well as working at the European level, the EUDF also supports translation of its efforts to national and regional initiatives. At present, a number of national/regional forums are at various stages of development – successful examples are the Belgian and Romanian Forums at www.belgiandiabetesforum.be and www.forumdiabet.ro
So far, the EUDF has identified three main areas of policy focus: integrated care, data and registries and digitalisation and empowerment of self-care. To ensure delivery in these, three Strategic Forums were created during 2021 to generate policy recommendations. After appointing a chair and around 15 expert members, each Forum defined its work plan and key deliverables. All members and chairs are working as volunteers.
All recommendations from the three Forums can be found at https://www.eudf.org/our-work/recommendations
“Integrated care represents efficiency and value for money, and it needs to be at the foundation of diabetes healthcare in every setting and country in Europe.” (EUDF)
A number of models and pilot schemes around Europe show that integrated care plays an important role in the quality, efficacy and efficiency of diabetes management. However, there are still many gaps in the level of integration across care systems. In part, this reflects differences in infrastructure and resources across Europe. The failure to fully integrate care results in inefficiency and suboptimal clinical performance. This, in turn, drives up care costs and increases the health burden on people living with diabetes.
The EUDF considers that diabetes care should be redesigned to better meet the needs of those living with the condition. The use of technology, addressing inequalities in diabetes care and addressing psychosocial concerns should be considered during such redesign. Healthcare professionals should focus more on supporting integrated care models and pathways, rather than just following routine. And, at the system level, this approach should be supported by constructing transferable principles that can be applied across divergent healthcare systems.
With all the above in mind, the EUDF proposes strategies to improve integration in all diabetes care settings. These include implementing assessment models and developing patient-centred pathways for diabetes care. Also, educational curricula need to be revised and incentives put in place to encourage cooperation and teamwork within and between primary and secondary care settings.
Data and registries
“It takes more than a registry to improve care, we need to use data to raise awareness and initiate action to improve outcomes for people with diabetes.” (EUDF)
The EUDF is well aware that the diabetes community in Europe has launched several programmes over the last decades, including the St Vincent Declaration, with the vision of improving outcomes. These projects, although ambitious, generally resulted in only incremental improvements. One reason was that, in most countries, the outcomes of diabetes care could not be monitored accurately because of the absence of quality registries. In Europe today, most diabetes data are estimated, rather than robust, with a few exceptions. Registries, where they exist, are a source of valuable scientific data but are not applied as often as they perhaps could be to significantly improve diabetes care.
The Forum sets out what is needed to create a meaningful, working diabetes registry. First, decision-makers must accept that changes are needed. Second, a dedicated team should be given the authority to develop a registry at local or regional level and manage it, with the mandate to improve agreed standards of care. Finally, following successful regional efforts, a broader European registry should be rolled out.
Diabetes registries will help enable a more evidence-based and data-driven approach to diabetes management. For instance, they will contribute to quality control and better adherence to guidelines and track performance across clinics and regions, helping to identify reasons for variation in outcomes. All of this can help reduce costly complications. An example of a registry that works well is the global paediatric SWEET registry (www.sweet-project.org).
Policy makers, health authorities, healthcare professionals, industry and people with diabetes should work together to create registries throughout Europe, where they do not already exist, and expand and strengthen those that do. The EUDF has already set out recommendations on the governance of registries, on procedural aspects like data input and the indicators that should be included and implementation strategies.
Digitalisation and empowerment of self-care
“Creating an environment where successful digital solutions can be easily shared throughout Europe to support their people with diabetes.” (EUDF)
At the moment, there are two distinct trends around the use of digital tools in diabetes care. On the one hand, physicians sometimes seem reluctant to introduce or use these tools. On the other hand, there is a rapid increase in the development of intuitive digital tools to meet the needs of people living with diabetes.
There is evidence that digital support via an app or online improves the empowerment of people with diabetes, leading to better self-management and decision-making. And improving self-management is the key to achieving a high level of compliance with therapy, which should lead to better health outcomes, with reduced risk of complications and a better quality of life. Here, digital tools, including apps, can serve as the patient-facing interface for digitally enabled care. They enable better day-to-day support, greater flexibility and connectedness, which can enable remote monitoring and more data-driven decision-making.
Many EU countries are starting to devise policy to support health and diabetes apps. The EUDF suggests creating an environment where digital solutions that prove successful for people with diabetes in one country can be shared easily with other countries, stakeholders and organisations to broaden their reach within Europe. The Forum wants to accelerate this process with recommendations on how to develop a user-centred app, implementing a best-access pathway for apps and supporting the integration and uptake of high-quality apps into the healthcare system.
The path forward for the EUDF
The EUDF has been working with the WHO and WHO Europe to align messages and discuss priorities and is accredited as a ‘non-state actor’ for WHO Europe. The EUDF has welcomed the WHO’s Global Diabetes Compact and wants to work further to refine its coverage targets to European standards.
Meanwhile, there are currently several opportunities in the European policy environment to advance this work. The European Commission has launched ‘Healthier Together – EU non-communicable diseases initiative’, which is a comprehensive roadmap to guide and support member states in addressing the challenge of highly prevalent non-communicable diseases, including diabetes. The EUDF and its members have given their input on the priorities of this initiative and provided examples of best practices. They are now working at member state level to implement these examples. Countries and stakeholders can apply for support for policy projects and interventions, via EU funding, mainly from EU4Health.
In addition, a Joint Action on cardiovascular disease and diabetes, funded under the 2022 EU4Health Work Programme has been launched. Member states can submit proposals to the European Commission for the development and implementation of the Programme. The EUDF will continue to engage with these opportunities and encourage country experts and its own partners to contribute.
In conclusion, although diabetes is one of the greatest health challenges that Europe faces today, we can address it by using the tools available and taking the necessary policy actions. All of Europe’s major diabetes stakeholders have now come together in the EUDF to generate ideas and recommendations. Driving forward solutions in integrated care, registries and digitalisation and self-care will promote a more person-centric and data-driven approach to diabetes management, which should result in fewer complications, improved quality of life and more efficient use of clinical resources.
The EUDF will continue to act as an expert partner to promote these efforts. The authors end by saying: “Our vision is to achieve better outcomes for people with diabetes and enable healthcare systems to cope with a devastating epidemic that can no longer be swept aside. The time to act is now.”
To read this article, go to: Mathieu C, Soderberg J, Del Prato S, Felton A-M, Cos X, de Beaufort C, Gautier J-F, Hauck B, Forbes A, Heine R, Schwarz P and Tobeyns B on behalf of the European Diabetes Forum. The European Diabetes Forum: a forum for turning the tide on diabetes in Europe. Diabetologia 17. November 2022. https://doi.org/10.1007/s00125-022-05831-1
Any opinions expressed in this article are the responsibility of the EASD e-Learning Programme Director, Dr Eleanor D Kennedy.