Giving patients a voice in health service delivery

Aigerim is a summer intern with the GO Lab and is completing her Master of Public Policy at the Blavatnik School of Government. In this piece she shares her story as a diabetes advocate and why is passionate about finding ways to put the voice of patients at the heart of public services. 

The global epidemic of diabetes

Diabetes is a major public health problem, which poses threat to national health systems and economies worldwide. The International Diabetes Federation (IDF) estimates that globally more than 425 million people suffer from diabetes. It is the main cause of blindness, kidney failure, cardiovascular disease and lower limb amputations. The World Health Organization projects that diabetes will be the seventh leading cause of death in 2030. While most countries, including the developed economies, struggle with the increasing demand for health care as a result of ageing population and growing prevalence of non-communicable diseases, least developed countries are the most vulnerable to these challenges. It is important to note that 75% of diabetes cases occur in low and middle income countries. Such an overwhelming prevalence of the disease is highly attributable to poor socio-economic determinants. 

Diabetes in Kyrgyzstan: country profile 

I come from Kyrgyzstan, a lower-middle income country with a limited capacity to provide essential health care services. It is estimated that nearly 60 000 people live with all types of diabetes (but the number can be as high as 180 000), with the majority having type 2 due to unhealthy lifestyle. It is worth pointing out that Kyrgyz culture has been largely shaped by the nomadic lifestyle of our ancestors. They used to move continuously in mountainous areas and survived on high energy density foods. Over time Kyrgyz people adopted a sedentary lifestyle, but haven’t adjusted the diet accordingly. Moreover, the process of globalization led to the proliferation of fast food industry, which may explain the growing epidemic of diabetes and obesity. According to IDF, over 50% of the population remains undiagnosed. Low detection poses additional challenge to a healthcare system leading to an increased demand on health and social services as a result of severe, and yet preventable complications, and consequently to losses in economic productivity. Diabetes causes more than 2,600 deaths per year, while the government expenditure on one person with diabetes accounts for only $ 139.7

My story as a diabetes advocate

Many people ask me why I committed myself to addressing the problem of diabetes. My passion and commitment have been fueled by a personal cause. I was diagnosed with type 1 diabetes when I was 8 years old. Type 1 diabetes is an auto immune disease, which is characterized by an absolute insulin deficiency and is common among children and teenagers. My condition requires constant monitoring of blood glucose levels, multiple daily injections of insulin, and regular doctor appointments. While I never let my condition limit my personal, academic and professional aspirations, I was never open about it and took a certain pride for making diabetes invisible. As I am reflecting on my experiences as a service user, I realize that I haven’t established close relationships with my doctor and always felt that I was failing if my Hb1AC levels were too high. I have always been told that my well-being depends only on how strictly I follow my medical treatment. We never discussed options for personalized care or support planning, which are crucial for effective diabetes management. I’m convinced that such top-down approach in health care has been largely influenced by the Soviet Union legacy, where challenging the authority was not an option. My low diabetes profile continued until I accidentally came across the summer camp for young diabetes advocates organized by the International Diabetes Federation in the Netherlands back in 2015. The experience in the camp was a turning point in my personal and professional journey. Later I joined the local diabetes association with the goal to raise awareness and empower patients like myself to take active position in their own health care. 

As a result of continuous engagement with key government agencies and donor organizations on advancing diabetes policy reforms, I was introduced to impact bonds as a tool to improve health outcomes of patients with diabetes. I became increasingly interested in outcomes based commissioning and potential application of Impact Bonds on health interventions. Having worked extensively in various development projects, I became frustrated that massive flows of funds were directed towards activities and outputs with little focus and impact on outcomes. Impact bonds seemed as a viable financing mechanism to fund interventions aimed at improving health services on lifestyle interventions, specifically for Structured Education in Diabetes Management (SEDM). 

Impact bonds as an innovative financing mechanism to improve health outcomes of patients with diabetes 

Access to essential medications is a primary objective for effective diabetes care; however, the success of traditional treatments is always challenged by patients’ poor knowledge about the condition. SEDM programmes increase patients’ awareness and consequently prevent the onset of complications associated with type 1 diabetes and the growing epidemic of type 2. In many developing countries, including Kyrgyzstan, SEDM is not a priority for policy makers due to limited financial and human resources. Most of the funds are allocated for the procurement of insulin and other diabetes medication. Hence, SEDM programmes could be implemented through an impact bond financing, as they focus on collaboration, prevention and innovation. Designing an outcomes based contract will require careful planning and assessment of structural impediments, since these tools are generally absent in the policy making world in the context of Kyrgyzstan or other developing countries. However, there is certainly a political will to harness and bring new capital for improving social outcomes, as it is evident from a fairly new legislature on public and private partnership in Kyrgyzstan. 

With SEDM many of the pre-conditions for successful outcomes-based contracting are in place, such as clearly defined eligible cohort of patients, whose health outcomes may be measured using the results of HB1AC levels and attributed to the intervention.*  Furthermore, SEDM will positively facilitate and welcome the voice of service users, as they will be designed according to individual needs of patients. 

As someone, who has been living on a receiving end of ineffective and fragmented health care service delivery, reactive responses to diabetes epidemic and cultural inertia among healthcare providers, I am committed to bringing the voice of service users and their lived experiences into the decision making process. It is possible to effectively counter the prevalence of diabetes and save lives by combining efforts and exploring alternative solutions that traditional policy making is not able to achieve in isolation.

*HB1AC – glycated haemoglobin is a blood test, which shows the average concentration of blood glucose over the period of 3 months