Diabetes & data: can digitalization unlock better care? (Guest blog)

The world is going digital. Travel, banking, entertainment – almost everything we do has been digitalized, with online data accessible through user-friendly apps and websites. We are seeing this trend in diabetes care too, but at a slower pace. Accelerating progress is urgent and necessary if we are to manage the rising number of cases of diabetes in Europe and improve health outcomes.
To unleash the full potential of digitalization in diabetes, there are several barriers to overcome: fragmentation and a lack of interoperability between registries are holding back progress. Simply put, we have plenty of diabetes data, but it is stored in multiple locations – in hospitals, in GP clinics, on patients’ smartphones – and in formats that make it difficult to pull everything together in a way that is useful to patients and health systems. Despite generating more information than ever, most health data is not put to work – around 80% remains untapped.
Overcoming this is a major challenge. However, the effort required will be worth it. Consider the prize: thanks to the EHDS, people with diabetes could have access to all of their personal data even while travelling across Europe, allowing them to make informed decisions about their care and supporting continuity of care. For health systems and health professionals, the reward for solving the data challenge is unprecedented insights into what works. This is the path to a more efficient, sustainable health system. For patients and for health systems, knowledge is power.
A new era for diabetes data
To understand the scale of the problem – and the potential benefits on offer – let’s consider what we mean by digital health. From e-health, mhealth and telehealth to electronic health records, remote monitoring, connected devices and digital therapies, the range of tools that can collect and use data is growing fast. And while the proliferation of data can amplify the challenges, advances in artificial intelligence (AI) and machine learning offer new promise for translating information into insights.
Taken together, digital health tools can revolutionize diabetes care, powering the integrated, people-centric, outcomes-based health systems we need. To make this happen, Europe needs a health data coalition to build public understanding of the value of health data, and to enhance confidence in how data are collected and used. This must be backed up by EU-wide political leadership and collaboration between patients, the public, industry, the health workforce and technical specialists.
The EFPIA Diabetes Platform is playing its part by actively contributing to the European Diabetes Forum (EUDF) strategic forums on Digitalization & Self-Care and on Data & Registries. In collaboration with other stakeholders, we are working towards models of care that collect and integrate high-quality outcomes data from many sources under clear governance structures.
We take inspiration from countries like Sweden which has embraced transparent reporting of outcomes data. This approach, if applied across Europe, paves the way for benchmarking of health outcomes within and across countries. A wealth of high-quality, comparable data would inform decision-making by policymakers, HCPs, service providers, payers and patients. While a significant investment of effort, time and resources would be required, it would deliver value right across the healthcare system.
The case for diabetes registries
Registries are an increasingly vital part of the diabetes landscape. However, despite their added-value, registries are largely underutilized in Europe, with just a few countries having national diabetes registries. To ensure the full value of registries is realized, it will be critical to provide health professionals with feedback from registries outcomes. This closes the “feedback loop” and ensures that patients are treated optimally.
As the EUDF has highlighted, registries enable an 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”.
The EUDF recommendations on registries offer a roadmap for advancing the integration of registries in the diabetes care systems across Europe[1]. They include a range of detailed recommendations under four headings:
  1. Develop procedures and governance models for registries
  2. Ensure robust coverage and complete data flow
  3. Maintain flexible and adaptable registries
  4. Develop implementation strategies
The EDHS: a catalyst for progress 
Many of the barriers to solving this problem have been with us for some time. However, there is now a real opportunity for a breakthrough. The proposed European Health Data Space (EHDS) opens new possibilities to tackle fragmentation and usher in an era of data-driven decision-making and patient empowerment.
One of the key benefits is the scale that the EHDS can bring to the secondary use of health data. Studies which inform decisions are currently often performed in a small set of databases clustered in a few EU Member States, limiting their geographical and demographic sample sizes. The EHDS proposal seeks to overcome this fragmentation and the over-reliance on consent by creating a strong legal framework for the use of health data for research, innovation, public health, policy-making and regulatory purposes.
Pooling and sharing knowledge, experience and data helps to develop practical solutions for patients. The EHDS can enable the development of innovative approaches to diabetes registration, allowing for more timely and efficient collection of data. This will help to provide real-time information on the state of play across the EU.
We are at a pivotal moment for diabetes care in Europe where the rising burden of cases is occurring in parallel with advances in data and digitalization. Through the concerted action of all stakeholders, and the political will required to maximise the impact of the EHDS, we can rise to this challenge together. 
[1] Data and Registries - Recommendations - Our Work | European Diabetes Forum (

Sophie Noya

Sophie Noya is Director Public Policy at MSD. She has been actively engaged in the topics of digital, diabetes...
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