Publications

2022

Diabetes Registries: Enabling high quality diabetes care 

Diabetes registries, which collect, track, and analyse patient data on parameters ranging from clinical characteristics, risk factor control indicators, diabetes complications, and treatments, can become an essential tool for improving the quality of diabetes care and securing better outcomes for people with diabetes when integrated in the diabetes care system. 
Read more

Created with Sketch.

Registries enable evidence-based approach to diabetes management. They ensure quality control and better adherence to guidelines; track performance across clinics or regions and help identify the sources of variation in outcomes; and inform the delivery of care and treatments, which can reduce costly complications. 

Yet despite all these benefits, registries are severely underutilised across Europe, with only a handful of countries with national diabetes registries. Given the growing burden of diabetes and the mounting costs to individuals, families, societies, all stakeholders to work together to advance the integration of registries in the diabetes care systems throughout Europe. 

There are many political and logistical challenges to realising this vision, but the most important thing is to get registries started –depending on the country in regional settings at first, and then – when successful – to expand nationally. 

The European Diabetes Forum, a representative group comprising healthcare professionals, researchers, industry associates, and people with diabetes, have compiled recommendations on building, maintaining, and utilising registries, outlining general principles and guidance on issues related to governance, data collection, and structure and scope. As always, it takes more than just a diabetes registry to improve care. Registries must be designed and used not just for data generation, but always with the goal of improving outcomes for people with diabetes.


Read Recommendations

Five Priorities for Advancing Integrated Care

Integrated care is an emergent set of practices that seeks to move away from care that is fragmented, episodic, and service-based, with care that is continuous, coordinated, and outcomes-focused. As the WHO describes it, integrated care is “seamless, smooth, and easy to navigate.”
Read more

Created with Sketch.

For people with diabetes, the practical implications of integration are not theoretical, but fundamental to how people access and navigate the health system. Diabetes is a lifelong disease, with daily challenges requiring lifestyle adjustments and consistent engagement with therapies and technologies, a burden that can have significant physical and psychological repercussions if not properly managed. Greater integration of care therefore promotes a long-term and more holistic focus towards people with diabetes that is well suited to the complexity of the disease. Integration is about improving outcomes and improving the quality of life for people with diabetes, two aspects that are interrelated.

Nonetheless, the immensity of the topic often leads to a sense of paralysis and an uncertainty about where to begin. To make advances in integrated care, prioritisation is needed.

The European Diabetes Forum, a group consisting of healthcare professions, researchers, industry representatives, and people with diabetes, have put forward five priorities to make progress in integration. These are pragmatic strategies to improve integration in all care settings, including implementing assessment models, developing patient centred pathways for diabetes care, revamping educational curricula, and putting incentives in place to encourage cooperation and teamwork within and between primary and secondary care settings.

Integration is a process more than an end state. In the diverse countries of Europe, there is no magic formula for integration. What is important is to apply a general set of principles, analytical perspectives, and tools that over time will lead to long-term shifts in the way people experience care, and the way care is provided.


Read Recommendations

The Promise of Digital Tools: A roadmap for apps 

Digital technologies are driving significant changes in healthcare, offering new solutions to assist in preventing, diagnosing, and treating chronic diseases. Diabetes is ideally suited to benefit from these types of digital tools, given it is a largely a self-managed condition, and especially data-driven.
Read more

Created with Sketch.

The following document and series of recommendations, compiled by a representative group of the European Diabetes Forum consisting of healthcare professionals (HCPs), researchers, industry representatives, and people with diabetes, focuses on one crucial aspect of this digital revolution: mobile health applications, or “apps.”

Mobile apps is a burgeoning field of innovation in healthcare with enormous potential both to help people with diabetes track the multitude of information related to their condition, while also facilitating a more informed and data-driven approach to decision-making from HCPs. 

The following document examines some of general benefits of apps in diabetes, before delving into a more specific consideration of the role of medical apps. Medical apps are, appropriately, more tightly regulated and therefore require policy interventions, as they go beyond purposes of lifestyle, motivational, or educational support, and play a role in monitoring, treating, or managing diabetes.

The integration of medical apps into diabetes care poses many challenges. There are many new apps on the marketplace, but regulations and policy solutions must catch up to keep pace with the new technology. Countries are only now beginning to establish further procedures that allow for review, monitoring, and better integration of medical apps into clinical pathways.

The goal of public policy should be to nurture a responsible and responsive environment that unlocks the positive potential of digital innovation, one that puts the needs of people with diabetes first. To realise the potential of mobile apps, two conditions must be in place: apps must be easily available and accessible to people with diabetes and HCPs, and they should meet high standards of effectiveness and quality.

The recommendations that follow offer guidance and best practice examples on developing a user-centred app, on facilitating an access pathway for apps, and on supporting a swift and appropriate integration of medical apps into health systems.

In a continent as diverse as Europe, policy is not a one-size fits all proposition. But new solutions are needed to improve care and outcomes for people with diabetes, and apps offer enormous promise to give people with diabetes and HCPs alike the tools they need to better manage this condition. 


Read Recommendations

2020

Implementing integrated diabetes systems in Europe - The enabling role of integrated finance and IT

Integrated diabetes systems, comprising horizontal and vertical integration, present an opportunity to reduce the fragmentation of care, ultimately increasing the efficiency and effectiveness of diabetes services.
Read more

Created with Sketch.

The following calls to action are based on a scorecard benchmarking the level of service, IT and financial integration in 28 European countries, plus discussions with experts in diabetes management and integrated services.

Read the full report
View the full scorecard

Digital Diabetes Index - Enhancing diabetes care through digital tools and services

The Digital Diabetes Index benchmarks the readiness of ten European countries to deploy digital interventions, focusing on digital technologies used to care and treat people with Type 1 and Type 2 diabetes.
Read more

Created with Sketch.

The findings of this research indicate five key enablers of access to digital diabetes tools, here we provide a summary of those enablers and how they can be leveraged to improve access to digital diabetes tools with the aim of improving outcomes for people with diabetes.

Read the full report
Access the Digital Diabetes Index workbook

Putting people at the centre: Integrated care for chronic diseases in Europe

The chronic disease epidemic is placing a growing burden on healthcare systems at large. Integrated care, as defined by the Expert Group for Integrated Care and Digital Health Europe (EGIDE), involves the provision of seamless, effective and efficient care and prevention that responds to all of a person’s health, social and personal needs.
Read more

Created with Sketch.

This policy paper highlights a number of interventions aimed at bringing the concept of more integrated care solutions for patients living with chronic diseases in Europe closer to reality. When conducting our research, our first focus was to identify enablers to overcome the barriers preventing the shift towards integrated care in Europe. We then developed policy recommendations to support the implementation of those enablers.

Read the EGIDE policy paper

A vision for digitally enabled diabetes care in Europe - Views of leading stakeholders

Digital transformation of diabetes care has the potential to empower systems to manage costs and engage their resources efficiently; to improve the quality and continuity of care for people with diabetes, including by reducing geographical barriers to access to care; to enable better governance and policy planning in areas beyond diabetes; and finally, to foster innovation and collaboration among industry players to develop products and solutions to support diabetes care.
Read more

Created with Sketch.

This paper captures the insights and ambitions of patient advocacy groups, healthcare professionals, policymakers, and industry representatives focused on a better, and achievable, future for people with diabetes. 


Read the full paper

Statement from the European Diabetes Forum on the European Commission’s interim report of the Mission Board for Cancer 

We have taken notice of the European Commission’s interim report of the Mission Board for Cancer and were surprised by the fact that diabetes was described as a lifestyle disease.
Read more

Created with Sketch.

This description does not reflect the scientific evidence and suggests diabetes to be a mere issue of lifestyle, and thus of minor importance. 


Read the EUDF statement

2019

Improving outcomes for people with diabetes - The role of health data, access to innovation and rethinking care 

Improving diabetes care is a major public health challenge, requiring urgent action. Today, the scale of the problem has grown substantially, despite the emergence of innovative therapeutic options and advances in digital health.
Read more

Created with Sketch.

There is variation across Europe in how health systems manage diabetes and prevent complications, and significant differences in outcomes for people living with the condition.

Read the full report

Enabling self-efficacy through digital technologies and innovative therapies 

Patients have the tools to measure and record data and, increasingly, have access to innovative technologies and therapies that give them an active role in their care. This offers unprecedented opportunities for secondary prevention and behavioural changes and can spare people with diabetes from suffering complications that result from poor glucose control. 

Read more

Created with Sketch.

But which digital health interventions could be most beneficial for people with diabetes? How can data sharing improve outcomes, reduce health system costs and support up-take of innovative approaches to diabetes management and care? What are the barriers that need to be overcome in order to benefit from innovative technologies and therapies? 


Read the full report

Rethinking Health Systems: Integrated care and empowerment of primary care for people with diabetes

Making the transition from existing models of care poses challenges for health systems, healthcare providers and patients alike. For diabetes care, the degree of difficulty in successfully managing this chronic disease varies from one patient to another. Facilitating integrated care pathways becomes an essential tool in delivering effective healthcare to diabetes patients. 

Read more

Created with Sketch.

But how can healthcare systems consider different patient profiles and perspectives when designing care? What tools and technologies are needed to enhance the communication between providers on one side and between providers and patients on the other side? How can we align care coordination efforts among healthcare providers? 


Read the report

Define, Track, Measure and Improve - How health data and registries can help improve health outcomes for people with diabetes

Measuring health outcomes is an essential tool in understanding their variation; identifying areas for improvement and assessing the benefits and impacts of clinical practice and care pathways; guiding public health policies and interventions and facilitating integrated care pathways.

Read more

Created with Sketch.

Registries play a significant role in collecting, measuring and reporting the health data that can inform these processes. Given the complex nature of managing chronic diseases such as diabetes, registries and health data can play an essential role in catalysing an evidence-based approach to disease management. 


Read the report

2018

A Call to Action - To all stakeholders in the European diabetes landscape 

Improving diabetes care is a major public health challenge, requiring urgent action. Today, the scale of the problem has grown substantially, despite the emergence of innovative therapeutic options and advances in digital health.

Read more

Created with Sketch.

Unite behind this Call to Action which outlines the urgent and problematic diabetes situation in Europe, the underlying causes, and the directions for solutions. Together we need to enable healthcare systems to cope with the diabetes pandemic.

Read the Call to Action