Co-creating a community health research agenda with a youth advisory group in rural Cambodia: process, involvement, and outcomes

In the vast landscape of global health, a quiet imbalance has long persisted. For decades, the questions driving medical research have often been set by wealthy nations and distant institutions, rather than by the people living in the communities where diseases strike hardest. This disconnect can lead to studies that miss the mark, focusing on problems that researchers think are important while overlooking the daily realities of those who need help most. To fix this, a growing movement seeks to bring communities into the room where decisions are made, not just as subjects to be studied, but as partners who help shape the questions themselves. This approach, known as participatory research, relies on the idea that the people living with a health challenge know their world better than anyone else. It asks a simple but profound question: what if the people most affected by a disease were the ones leading the search for answers?

In the remote, rural district of Siem Pang in northeastern Cambodia, a group of young people took up this challenge. They are part of the Youth Advisory Group on Health and Research Engagement, a team of secondary school students and young adults who have been working with researchers for several years. In a recent project, these young members stepped out of the role of assistants and into the role of leaders. They designed and conducted a study to find out what their neighbors were most worried about regarding their health. Instead of bringing in outside experts to ask questions, the young team members interviewed their own community members, listened to their stories, and helped decide which health issues deserved the most attention. Their work revealed a community facing a double burden of illness, where old infectious diseases still linger alongside a rising tide of modern chronic conditions, and where the most urgent need for new research was not what many outsiders might have expected.

The study began with the young team members preparing themselves. Before they could talk to their neighbors, they received training on how to listen carefully and ask the right questions. They learned how to guide conversations without judging, how to understand the local diseases, and how to record what they heard. At first, some of the young researchers felt unsure. They worried they did not know enough about medicine to ask deep questions or to understand the answers. But as they practiced, their confidence grew. They learned to probe deeper, to ask follow-up questions that helped people share more than just surface-level facts. They also realized that their own knowledge of the community—their language, their culture, and their shared experiences—was a powerful tool that outside researchers could never fully replicate.

The team went out into eight different villages and spoke with fifteen community members. These neighbors included farmers, teachers, shopkeepers, and students, ranging in age from eighteen to sixty. The young researchers conducted two rounds of interviews with each person. In the first round, they asked people to talk freely about what health problems worried them and their families. Between the two rounds, the participants were asked to take photos and short videos of their daily lives using their smartphones. They captured images of their water sources, their food, their waste, and their habits. These digital diaries gave the researchers a window into the real-world context of the community, showing exactly where risks hid in plain sight. After reviewing these images and the first round of talks, the team held a second round of interviews to dig deeper into the specific risks and barriers people faced. Finally, the group came together for discussions where they ranked the health issues they had heard about, deciding which ones were the most pressing.

What emerged from these conversations was a clear picture of a community living with two distinct types of health threats. On one side, there were the infectious diseases that have long plagued the region. While malaria, once the dominant fear, was reported to be declining thanks to better control measures, other infections remained a serious worry. Typhoid fever was mentioned frequently, often linked to a lack of clean toilets and safe water. Many people described having to drink from ponds or canals because they could not carry boiled water to the fields, or having to use the forest for sanitation because there were no toilets nearby. However, the most feared infectious disease was dengue fever. Community members described it as a severe and terrifying illness that could leave people unconscious, require weeks in the hospital, and drain a family's savings. One farmer recounted a single bout of dengue costing her family six hundred thousand riels, a sum that represented a significant portion of their livelihood.

On the other side of the balance sheet were non-communicable diseases, the chronic conditions often associated with aging and lifestyle. The community was increasingly worried about diabetes and high blood pressure. These were not seen as distant problems but as immediate threats, particularly for middle-aged and older adults. People described diabetes as a "silent killer," a disease that could strike without warning and lead to death. High blood pressure was viewed as a common companion of aging, worsened by a lack of exercise and a diet heavy in salt and fat. The community members showed a sophisticated understanding of how their daily habits contributed to these risks. They knew that eating too much salty fermented fish paste could raise blood pressure, that drinking sugary drinks could lead to diabetes, and that eating raw vegetables without washing them properly could cause stomach infections. They also pointed to a newer, environmental threat: plastic pollution. They saw how burning plastic in the yard created toxic smoke that could cause cancer, how plastic waste collected rainwater and bred mosquitoes, and how serving hot food in plastic containers might release harmful chemicals into their meals.

When the community members were asked to rank their concerns, the results were striking. Diabetes received the highest score, with an average rating of 9.1 out of 10, followed closely by high blood pressure at 8.7 and dengue fever at 8.0. In a separate exercise where they ranked potential research questions, the community voted overwhelmingly for a study on the prevalence of diabetes in their area. They wanted to know exactly how many people in their community were living with the disease, a question that had not been a priority for outside researchers until now. This choice highlighted a shift in their needs; while they still feared infectious diseases, the rising tide of chronic illness was becoming the most urgent mystery they wanted solved.

The process of doing this research was just as important as the findings. The young team members reported that the experience changed them. They gained new skills in communication and critical thinking, and they became more confident in speaking with people outside their usual social circles. More importantly, the community members who participated said the project changed their own lives. Many reported that simply talking about their health risks made them more aware of their habits. Some said they had started to eat less sugar, reduce their salt intake, or educate their families about the dangers of burning plastic. The act of participating in the research itself became a form of health education, a phenomenon where the process of asking questions leads to positive change even before any new medical treatment is developed.

The study also revealed the complex web of challenges that make it hard for people to change these habits. While everyone understood the risks, they faced structural barriers that were difficult to overcome alone. Plastic was cheap and convenient, and there was no garbage collection service, so burning waste was the only option. Clean water was expensive, and the demands of farming made it hard to boil water or carry it to the fields. Deeply ingrained cultural beliefs, such as the idea that keeping water jars uncovered brought good luck, sometimes clashed with health advice. The community recognized that knowledge alone was not enough; they needed support, better infrastructure, and policies that made healthy choices easier. They expressed a strong desire for more education and for health authorities to help them navigate these difficult choices.

This project demonstrated that young people in remote, resource-limited settings can lead complex research efforts with remarkable success. By placing the power to define the research agenda in the hands of the community, the study uncovered priorities that might have been missed by traditional research models. It showed that the people living in Siem Pang were not just passive recipients of health information but active observers of their own environment, capable of identifying the most critical gaps in their knowledge. The findings suggest that future research in the region should focus heavily on understanding and addressing the burden of diabetes and hypertension, while continuing to manage the risks of infectious diseases like dengue.

Ultimately, the work in Siem Pang offers a model for how global health research can be done differently. It proves that when communities are given the tools and the trust to lead, they can articulate their own needs with clarity and precision. The young researchers did not just collect data; they built a bridge between their neighbors and the wider world of science, ensuring that the questions asked in the future would be the ones that truly matter to the people living with the answers. The study concludes that this approach, which shifts the power from distant institutions to local voices, is a vital step toward creating a more fair and effective system of health research for everyone.