How a research center strengthened the role of NGOs in CVDs prevention and control: a Policy Brief

Heart disease is the leading cause of death in Iran, responsible for nearly half of all fatalities in the country. While hospitals are excellent at treating heart attacks and managing chronic conditions, medical experts have long known that preventing these diseases requires more than just clinical care. It demands a shift in daily habits, such as eating better, moving more, and avoiding tobacco. These changes are difficult to achieve in isolation; they thrive best when a whole community supports them. This is where non-governmental organizations, or NGOs, come into play. These are independent groups formed by citizens to address social needs, and they possess a unique ability to reach people in their neighborhoods, schools, and workplaces in ways that government agencies often cannot. However, despite their potential, these groups have historically played a limited role in fighting non-communicable diseases like heart disease, diabetes, and cancer. The question remains: how can a scientific institution help turn these scattered groups into a powerful force for public health?

A team of researchers from the Isfahan Cardiovascular Research Center in Iran set out to answer this question by looking back at their own work over a quarter of a century. Rather than just studying heart disease, they studied how to build the organizations needed to fight it. From the year 2000 to 2025, the center acted as a catalyst, helping to create and strengthen specialized health groups. The researchers did not simply observe these groups; they actively helped bring them into existence. They worked with university professors, community leaders, and even food industry officials to form new associations. They also helped existing groups grow stronger by connecting them with the right partners. The result was a network of six distinct organizations, each with a specific focus, ranging from a national heart foundation to a society dedicated to helping people with high blood pressure.

The process began with a realization that the center's large-scale prevention programs needed a more permanent home for community volunteers. In the early 2000s, the center launched the Isfahan Healthy Heart Program, which brought together people from diverse backgrounds to improve public health. As these volunteers worked together, the researchers saw an opportunity to formalize their efforts. They started by training contact persons from thirty-seven different existing organizations, teaching them how to spread health messages within their own networks. They then moved to a more ambitious strategy: building new groups from the ground up. To do this, they engaged faculty members and specialists to lend their expertise and credibility, recruited community members who were eager to participate, and coordinated with government officials to navigate the legal requirements for registration. This approach allowed them to establish six new NGOs, including the Iranian Heart Foundation, the Heart Friends Association, and the Food, Industry, and Healthy Community Association.

Each of these organizations filled a specific gap in the health system. The Heart Friends Association, for instance, was formed by heart patients, their families, and doctors to provide education and support. They organized sports competitions and campaigns for global health awareness days, creating a space where patients could share experiences and learn how to manage their conditions. Another group, the Food, Industry, and Healthy Community Association, brought together food manufacturers, nutritionists, and regulators. Their goal was practical and direct: to encourage the food industry to reduce the amount of oil, sugar, and salt in their products. The research center played a crucial role in connecting these groups, ensuring that the food industry could advocate for healthier products during the campaigns organized by the patient groups. This created a cycle where scientific advice, community action, and industry change reinforced one another.

The researchers also established groups focused on specific medical needs and research funding. The Iranian Society of Hypertension was created to manage activities related to high blood pressure, expanding from a local group to a national society approved by the Ministry of Health. Another group, the Isfahan Cardiac Rehabilitation Society, focused on helping heart patients return to an active life by coordinating with sports centers and publicizing the benefits of safe exercise. Perhaps most uniquely, the Spadan Heart Health Research Support Association was founded to solve a specific problem: a lack of money for research. A group of specialists and philanthropists came together to provide financial support for studies that were too small or specific for large government grants, such as registering data on heart attacks in the region. This allowed the research center to continue gathering vital information even when funding was tight.

The success of this model highlights several key strengths. Because these organizations are independent and community-based, they can respond to local needs much faster than government bureaucracies. They can reach vulnerable populations that might be afraid of or distrustful of official institutions. Furthermore, by mobilizing volunteers and private donations, they reduce the financial burden on the state while delivering cost-effective prevention services. However, the researchers also identified significant challenges. Many of these groups initially relied heavily on the research center for guidance and resources, raising questions about their long-term independence. There is also a risk that without clear rules and coordination, these groups could work in isolation, duplicating efforts or missing the bigger picture. The study suggests that for this model to work on a national scale, the government needs to create a legal framework that supports these organizations, provides them with technical training, and establishes a system to monitor their impact.

Ultimately, this case study demonstrates that a research center can do more than just publish papers; it can act as an incubator for the very organizations needed to turn scientific knowledge into real-world action. By bridging the gap between policy, research, and community needs, the Isfahan Cardiovascular Research Center showed that specialized health NGOs can become powerful partners in the fight against heart disease. The experience offers a roadmap for other countries, particularly those with limited resources, on how to build a health system that is not only scientifically sound but also deeply rooted in the community it serves. The path forward requires deliberate investment and supportive policies, but the potential to reduce the burden of heart disease through these collaborative efforts is clear and tangible.