David Beran, Kurt Højlund, and Anders Green are getting close to publishing a whitebook that compiles all existing data on type 1 diabetes in Denmark. The hope is that the whitebook will be used as a roadmap to improve data on diabetes, and thereby diabetes care, on a global scale.

David Beran is an Assistant Professor at the University of Geneva. He has a Danish Diabetes Academy Visiting Professorship grant at the Steno Diabetes Center Odense with Kurt Højlund as PI. From the get-go, David Beran’s project has been to improve the understanding of type 1 diabetes globally, especially for low- and middle-income countries, all through lessons taken from Denmark’s data practices.

Earlier this month, David Beran and his team had a correspondence piece published in The Lancet titled A Plan to Improve Global Type 1 Diabetes Epidemiology Data, outlining some of the problems and possible solutions on the subject. This project has significant global implications, and this year, it all culminates with the publication of a whitebook.

We have asked David Beran some questions to understand the scope of the project and the hopes of its impacts.

Why do we need the coming whitebook?

David Beran: “There are two reasons for the whitebook. Firstly, to show what is known and what is unknown about type 1 diabetes in Denmark. Existing data and publications in Denmark do not provide a full picture, and often this information is not presented together. The idea is to have one document that presents all present data on type 1 diabetes in Denmark. The other reason is to use Denmark as an example for other countries as to what can be done if a strong data environment exists. Denmark is quite unique with its health data environment and therefore a lot of information can be presented on type 1 diabetes.”

What first sparked the idea for making the whitebook?

David Beran: “I had the chance to work with Professor Anders Green on developing the first estimates of all people with type 1 diabetes as part of a collaboration with the World Health Organization (WHO). Previous estimates had only focused on the population aged 0-19 years. Through this work, it was clear that there are many gaps in our global knowledge of type 1 diabetes. These global gaps have their roots in national health systems not collecting data to know how many people have type 1 diabetes. This is not only an issue in low- and middle-income countries but also in countries like Switzerland where I am from. We have no idea how many people have type 1 diabetes in Switzerland because our health data is fragmented and not what it ought to be in such a wealthy health system. So, the idea was how could we try to do three things as part of this whitebook: Firstly, to document the situation of type 1 diabetes in Denmark in a comprehensive way, secondly, to look at lessons from Denmark for other settings, and finally, to use these two elements to develop a roadmap to improve our knowledge of type 1 diabetes globally.”

Which countries need this whitebook the most?

David Beran: “Any country without structured diabetes registries like Denmark needs this plan. This could be countries like Switzerland as previously explained, or it could be low- and middle-income countries. The main concept of the roadmap is to provide an “easy” guide for countries to improve their data collection, analysis, and presentation for type 1 diabetes.”

What are some of the problems regarding type 1 diabetes in low- and middle-income countries?

David Beran: “One of the main issues that many low- and middle-income countries have is access to insulin. This can be because insulin is not available or affordable. The same is true for tools used for blood glucose measurement. Beyond this, there are challenges in access to a health system with trained health professionals able to provide comprehensive type 1 diabetes care. Missing data systems is one component that results in poor follow-up as there is a lack of “history” of the patient and their previous clinical interactions and measures. In addition, data is needed for planning and monitoring purposes and a lack of data means this cannot be done.”

There are big differences between developing countries and high-income countries like Denmark - how do you address this in the whitebook?

David Beran: “The whitebook aims to provide a recipe and “lessons learned” for other contexts. Of course, it is impossible for many other contexts to develop what Denmark has done as this requires a substantial investment as well as an overall context that is favourable for creating such an environment. For example, there is the intangible trust that exists in Danish society regarding government institutions; a trust lacking in many other settings. The whitebook and roadmap provide some guidance mainly on improving data and knowledge on type 1 diabetes.”

What are your hopes for the future of this research and the whitebook?

David Beran: “Since the start of the project, there has been increased interest in better documenting the global epidemiology of type 1 diabetes. My hope is that the experience in Denmark and the whitebook can help move this agenda forward. I also hope the whitebook can show other countries what can be done when relevant information is available within the health system. Information is one of the six building blocks proposed by the WHO, and in many contexts, this element is neglected. With advances in technology for data collection, analysis, aggregation, and presentation there are many opportunities to improve this essential piece of the overall health system.”

What are some of the most useful lessons to take from Denmark?

David Beran: “The lessons from Denmark are with regards to data collection, data aggregation, use of data, communication of data and results, and intangible factors. For each of these factors, there are facilitators and challenges even within the Danish context. For data collection, the lessons are the primary role of the data collection and it being core to the system, and that the focus should be on the clinical interaction. The data environment needs to be part of daily clinical life, as this is the source of the data that will be used for different outcomes. It is also essential to have clear management of the system and have a gatekeeper. With regards to data aggregation, the lessons are that what is coded and entered is the data available and that there needs to be an understanding of the data environment and the clinical aspects of diabetes and its management. In using data in Denmark, this data can be used for multiple purposes, e.g., clinical interaction, quality reviews, reporting (institutional/governmental), and research. Challenges were noted in the communication of the results, and the need for competence and knowledge to understand the data as well as how to translate data into usable information. Importantly, there were also intangible factors such as the trust of the population in authorities as well as people giving back to the system that provides them with free healthcare, within a unique historical, political, social, and health context.”

What was the process of making this whitebook? 

David Beran: “The first step was to carry out a review of the literature published in peer-reviewed journals. In parallel, a review of so-called grey literature, government reports, reports from the Danish Diabetes Association, etc. was done. For each of these sources, the list of references was checked to ensure that all relevant material was included. Another component was understanding the Danish context through the analysis of existing data. For example, the whitebook includes an analysis of the prices of insulin in Denmark based on data available from the Danish Medicines Agency. The final component was the use of data from the Steno Diabetes Center Odense Diabetes Research Database to document missing elements from the existing literature. All this information formed part of the Danish part of the whitebook. To ensure that nothing was missed, together with Professors Højlund and Green, we decided to organise a “live peer review” of this work. We decided to do this so that it could be interactive and involve as many Danish experts as possible. This peer review was done at a meeting in Nyborg, and in my view, it was a real success, as it allowed for a rich discussion on the content of the whitebook and made sure that the content presented all the necessary information. In addition, key informant interviews were held to better understand what lessons could be taken from Denmark for other contexts. The analysis of these interviews was also presented for feedback during the meeting with Danish experts, as well as at an international exchange. The analysis of the Danish data and the lessons from Denmark enabled the preparation of the roadmap, which was presented during the international exchange for input and feedback.”

David Beran brings his expert knowledge to the discussion of the need for diabetes data in developing countries in the DDEA podcast Postdocs Talking episode ‘Broadening Our Perspective: Diabetes in Sub-Saharan Africa’.

Publication

A plan to improve global type 1 diabetes epidemiology data (The Lancet, Feb 1 2023)
DOI: https://doi.org/10.1016/ S2213-8587(23)00029-3

Contact Information

David Beran
Assistant Professor, University of Geneva
E-mail: David.Beran@unige.ch