The introduction of the first electronic medical registry and life-changing camps for children and youth with type 1 diabetes not only provides essential care and unprecedented insights into the disease, but fosters a genuine community.
28 February 2025 Andreea Enea
Back in 2012, Rwanda’s Ministry of Health (MoH) recognised a pressing issue – the growing diabetes crisis in the wake of the genocide that severely affected the health sector, calling for more efforts to understand and address the magnitude of the problem.
Our engagement in Rwanda, which began in 2005 with equipping healthcare professionals with skills to diagnose and manage diabetes, had seen a dramatic increase in the number of young people diagnosed with type 1 diabetes (T1D) - from three in 2003 to over 1,500 in 2018, as reported by our local partners in the country, the Rwanda Diabetes Association (RDA).
However, capacity building and diagnosis were just the first steps. The main challenge was elevating T1D care to a national healthcare priority, which required better diabetes care and self-management.
Fast forward to today, and the landscape has evolved.
The recently completed WDF project, 'Sustainable care for youth living with type 1 diabetes in Rwanda', implemented by RDA in collaboration with MoH and the Rwanda Biomedical Centre, was part of this change. The project started in 2020 with two ambitious goals: better self-management for children and youth with T1D, and improved patient registration and monitoring.
To meet these goals, RDA introduced summer camps for diabetes education and helped develop an electronic medical record (EMR) system to fill a critical data gap, ensuring everyone receives the care they need.
Their efforts have not only addressed the immediate needs of young patients but also laid the groundwork for future research and interventions.
Under the warm Rwandan sun, a group of children are laughing and dancing just like any other kids – despite living with type 1 diabetes. These children came together at one of the summer camps organised by RDA as part of the recently completed project in Rwanda.
Drawing on their extensive experience in T1D education and care, our partners have been working tirelessly to change the lives of those with T1D in the country: conducting quarterly clinic visits to monitor patients’ health status and adapt to their evolving needs, providing self-management education, and organising camps.
Between 2020 and 2024, RDA nurses and educators conducted hundreds of patient registrations, physical exams, laboratory tests, and self-management training sessions at district hospitals nationwide and the RDA clinic in Kigali.
These efforts revealed major improvements.
‘They now show increased independence in managing their condition by effectively monitoring blood glucose levels and interpreting results’, shares Etienne Uwingabire, senior nurse and Executive Director of RDA (pictured left).
Diabetes self-management education is indeed vital for people with diabetes.
It equips patients, families, and caregivers with the knowledge and skills necessary for effective self-care. Thousands of patients and caregivers have attended these sessions focused on understanding the disease and its treatment, nutrition and physical activity, medication adherence, and monitoring health status.
‘Patients and their families are more engaged during sessions, demonstrating a deeper understanding of diabetes and its implications’, adds Alvera Mukamazimpaka, nurse at the RDA clinic and a key part of the project rollout.
‘They actively participate in discussions and exhibit informed decision-making and problem-solving skills – a positive shift towards better self-care and collaboration with healthcare teams’.
For the 300 people attending the three summer camps organised throughout the project, it was more than just diabetes management training. The events are a hub of outdoor activities, individual counselling and education for family members, and courses on drug abuse, reproductive health and entrepreneurship.
Members of the RDA team, along with hospital staff and parents, expressed their insights on the positive impact of the camps and the hope provided to the adolescents who participated.
‘The youth summer camps have shown major benefits for the participants. They reported increased confidence and independence. Many displayed improvements in knowledge and self-management skills. They have been applying techniques from the training, such as adjusting insulin doses and interpreting blood glucose levels more effectively’, Etienne explains.
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There are many stories of children who had been hesitant to join sports or group activities. However, during the camps, they became more involved, with improved physical fitness and self-assurance.
‘What stuck with me most was the transformation of the children. They were so shy, barely speaking unless spoken to, often looking down or trying to hide behind each other.’, remembers Nathalie Bille, PhD candidate within WDF's digital health solutions team and part of the project.
Nathalie (pictured below) focused on the development of an electronic medical registry for T1D in Rwanda and its potential impact on quality of care. She had the opportunity to join the youth camps, which offered a deeper understanding of their experiences.
While the project's focus on self-care has improved quality of care indicators, its impact goes far beyond those numbers. Training young people in self-management and encouraging self-reliance and entrepreneurial spirit, our partners have seen them grow in ways that cannot be measured by metrics alone.
Some were moved to tears by fears about their future, like the thought they may never become parents. The camps addressed these concerns, offering education and reassurance that managing diabetes can still lead to a normal life. Others found life partners, dispelling the myth that diabetes is a barrier to starting a family.
The camps have created a safe and supportive environment where many have built lasting friendships with peers facing similar challenges, reducing their feelings of isolation and boosting morale.
The RDA team played a key role, shares Nathalie, who has been responsible for facilitating the development, implementation and evaluation of the type 1 EMR system. She has also supported RDA staff’s training in system administration and data collection.
‘They instilled confidence in the children; for many of them, who had never met another person with T1D before attending the camps, discovering that they were not alone was a powerful realisation’.
T1D data has long been missing, limiting our understanding and strategic planning for health interventions.To fill this gap, the Type 1 Diabetes Index was launched in 2022 by a coalition including Breakthrough T1D (formerly Juvenile Diabetes Research Foundation) and Life for a Child, the International Society for Pediatric and Adolescent Diabetes, and the International Diabetes Federation.
This global registry provides a better overview of the disease, revealing how many people struggle with T1D management due to limited access to resources and outdated healthcare staff training.
Despite these advancements, IDF’s Atlas Report indicated a major data gap for adults - out of 8.75 million people with T1D globally in 2022, only 1.52 million were under 20 years old. This reinforced the importance of rapid diagnosis, appropriate treatment, and education.
While the Index plays a vital role in assessing T1D's global impact, it stresses the need of real-time data and utility of digital tools like Rwanda's EMR to understand and manage the disease effectively.
Recognising the major gap in data, Nathalie explored how EMRs could improve T1D care processes and outcomes for patients in a less-studied context: low- and middle-income countries (LMICs). Her research, leveraging insights from the RDA staff, nurses and patients, resulted in developing a user-friendly EMR system for T1D management in Rwanda.
The system was designed to generate automatic reports, ensure reliable data, support patient follow-up, and safeguard data. It accommodates personalised treatment plans, tracks complication history, and considers mental health aspects often neglected in care.
The study showcased the EMR's ability to streamline clinical processes, enhance treatment decisions, and provide useful insights to HCPs and policymakers.
HCPs found the new system easy to use and well-suited for their everyday tasks, appreciating the streamlined data entry process and reduction in manual paperwork. Active involvement in the development increased their sense of ownership.
For patients, the EMR system provided a way of monitoring their health conditions over the long term, promoting adherence to regular visits and early identification of complication risks. As a result, the T1D digital registry prompted timely identification and treatment, which would enhance health outcomes for individuals living with T1D.
The EMR study emphasises that having high-quality data is key to achieving these outcomes.
In the two years following the system’s deployment, RDA has consulted more than 1,500 individuals with T1D and conducted more than 4,200 consultations.
As Nathalie observed, there have been significant improvements in patient health. The number of patients with HbA1C levels within the agreed range (≤64mmol/mol) increased from 41.9% at the beginning of the project to 73%.
While the current EMR system is an early version and may not capture all relevant data elements, the long-term goal is to slow the progression of chronic complications, improve health and quality of life, and reduce mortality rates among patients. Setting up the EMR required a balance between data needs and resource allocation. However, the engagement and motivation, particularly from RDA, who have a strong collaboration with the health sector, have been high.
'While we can't definitively say the EMR is solely responsible for the improvements we observed, it' is clear that it is making a difference', Nathalie adds.
The EMR system data can now be used to identify barriers to care, demonstrating the system's impact in identifying and highlighting healthcare issues. A decrease in access to glucometers from 70% to 54.1% post-implementation is one example, indicating the gaps that persist in the healthcare system.
'Often, access to testing tools and management supplies proves to be costly and relies heavily on funding, with limited institutionalisation into national T1D care packages', Nathalie explains. The lack of glucometers for people with T1D, or the diagnosis of new patients, may not always be accompanied by the provision of replacement glucometers.
Nathalie's research highlights the role of digital health solutions in elevating care for chronic diseases, particularly within the most underserved communities. The introduction of the EMR is a promising step, allowing for a more informed and precise approach to care.
See the full research here:• The development of an EMR system to improve quality of care for individuals with T1D in Rwanda • A qualitative exploration of the early adoption of an EMR system for T1D management in Rwanda • Evaluation of care and clinical outcomes after implementation of EMR for T1D in Rwanda
The EMR has potential to become an important tool for evaluating care quality and performance. However, these digital tools should be complemented by strategies to reduce disparities in resources and access, backed by adequate funding.
By integrating diabetes care into the existing health system and fostering a close community through education and self-management training, the project has created a sustainable foundation.
Looking forward, the focus could be on integrating NCD care services, combating exclusion and discrimination, and increasing education and awareness. A crucial aspect is building the capacity of patients, families, communities, and schools in T1D management.
Such steps can strengthen the project's sustainability and lay the groundwork for future initiatives.