The Unseen Burden: Why Accurate Data is Crucial for People Living with Non-Communicable Diseases

In many parts of the world, including Africa, individuals living with Non-Communicable Diseases (NCDs) face a significant challenge: the lack of systematic data collection. This gap not only leaves their needs unaddressed but also undermines the value of their lives. Dr. Tim Evans, Assistant Director-General of the World Health Organization, aptly pointed out that where people are not counted, their lives are not valued. This statement underscores the critical importance of comprehensive data collection in understanding and addressing the burden of NCDs, particularly diabetes.

For people living with diabetes, this lack of data has profound implications. Diabetes is a chronic disease that requires lifelong management to prevent complications such as cardiovascular disease, kidney failure, and lower limb amputations. However, without accurate information on the prevalence, treatment, and outcomes of diabetes, it is challenging for healthcare providers to tailor care to individual needs. This not only affects the quality of care but also hampers efforts to prevent and manage diabetes at a population level.

The burden of diabetes is particularly heavy in Africa, where the prevalence of diabetes is steadily increasing. According to the International Diabetes Federation, Africa is expected to experience the greatest increase in diabetes prevalence over the next 25 years, with a projected 143% increase by 2045. This trend is driven by factors such as urbanization, sedentary lifestyles, and unhealthy diets.

However, several countries have successfully implemented robust health information systems and diabetes registries, serving as inspiring examples for others to follow. Sweden's National Diabetes Register stands out for its comprehensive data collection, which has significantly improved the quality of diabetes care and reduced complications. Denmark's Steno Diabetes Center has pioneered integrated care models that have led to remarkable improvements in outcomes for people with diabetes. Finland has also made significant strides in diabetes management, with its comprehensive registry providing valuable insights into the prevalence and treatment of diabetes. Norway and the United Kingdom have likewise implemented successful diabetes registries, contributing to better care and outcomes for people living with diabetes. These countries' successes underscore the importance of data-driven approaches in addressing the burden of diabetes and offer practical strategies for other nations to emulate.

In addition to high-income countries, several low- and middle-income countries have also made significant strides in diabetes management through effective health information systems and registries. For example, Brazil has implemented the Brazilian Diabetes Society Registry, which collects data on diabetes prevalence, treatment, and outcomes, enabling healthcare providers to improve care quality and patient outcomes. Another notable example is India, where the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke (NPCDCS) has been instrumental in establishing diabetes registries and promoting diabetes prevention and management initiatives at the community level. These efforts highlight the importance of data-driven approaches in improving diabetes care and outcomes, even in resource-constrained settings.

The success of countries like Sweden, Denmark, Finland, Norway, and the United Kingdom in establishing robust diabetes registries and health information systems offers valuable lessons for others striving to improve their own healthcare systems. These countries demonstrate the importance of political commitment to prioritize NCDs and invest in comprehensive data collection. They have shown that collaboration between government, healthcare providers, and the private sector is crucial for the success of such initiatives. Additionally, these countries highlight the need for continuous monitoring and evaluation to ensure that the data remains accurate and up-to-date. By learning from these examples, other countries can develop effective strategies for addressing the burden of diabetes and other NCDs, ultimately improving the health outcomes of their populations.

For the general public, governments, and international organizations, the message is clear: accurate data is essential for addressing the growing burden of NCDs, including diabetes. Governments must prioritize the development of robust health information systems, while international organizations should support these efforts through funding and technical assistance.

As individuals living with Non-Communicable Diseases (NCDs), we hold a powerful role in shaping the landscape of healthcare. By advocating for our right to be counted in health data and raising awareness about the importance of accurate information, we can drive positive change in healthcare policy and practice. This advocacy can take various forms, from sharing our personal stories to participating in awareness campaigns and community events. We can also engage with policymakers and healthcare providers, highlighting the impact of NCDs on our lives and the need for improved data collection and management. Additionally, as advocates, we can work to reduce stigma and discrimination associated with NCDs, promoting a more inclusive and supportive environment for all individuals affected by these conditions. Through our collective efforts, we can ensure that the voices of people living with NCDs are heard and that our needs are met in healthcare systems around the world.

In conclusion, the absence of systematic data collection for individuals living with Non-Communicable Diseases (NCDs), including diabetes, represents a critical challenge that requires immediate attention. Accurate and comprehensive data are essential for informing policy decisions, enhancing healthcare delivery, and ultimately saving lives. Governments, healthcare providers, and international organizations must prioritize the establishment and maintenance of robust health information systems and registries to ensure that individuals living with NCDs are not only counted but also receive the necessary support and care. By investing in data-driven approaches, we can pave the way for a future where every life is valued and supported, regardless of their health condition. This requires a collective effort from all stakeholders, including people living with NCDs, to advocate for the importance of accurate data and its role in improving health outcomes globally. Through collaboration and commitment, we can address the gaps in data collection and management, leading to more effective strategies for preventing and managing NCDs worldwide.