Community perspectives and insights into cancer surveillance, prevention, and research: an engaged participatory approach to cancer epidemiology research in remote areas of Northeastern Uganda

Abstract

Background There is limited research on cancer screening, prevention and treatment in the remote areas of Northeastern Uganda. Specifically, there is limited research presenting cancer control stakeholder perspectives in remote settings, whereas stakeholders’ perspectives are critical for an engaged participatory approach to cancer control. This study therefore aimed to establish the community (patients, caretakers, opinion leaders, health managers and policy makers) perspectives on cancer surveillance, prevention, treatment and identify priorities for cancer research in Northeastern Uganda. Methods This qualitative research was part of a stakeholder’s consultation on cancer research priorities in Northeastern Uganda for Wellcome Trust research grant application, conducted by a consortium of research partners. Six semi structured Key Informant Interviews (KIIs), two focus group discussions (FGDs) and one community dialogue meeting were conducted between July and August 2025. Thematic data analysis was conducted to identify emergent themes from the interviews. Findings are presented using the key emergent themes, supporting quotes, and are presented in tables and text. This study is reported in accordance with Consolidated Criteria for Reporting Qualitative Research (COREQ). Key Findings There was delayed diagnosis in most cases for cancer patients. After the cancer diagnosis, patients were referred to Mulago Hospital, approximately 300Km away from their homes for further treatment, with many hesitations and incapacity to go to Mulago due to many social and economic challenges. There is no stand-alone cancer surveillance system in the country and currently it depends on health facility data which have lots of weaknesses including incompleteness and inaccuracy. Health facilities are ill-prepared to respond to the growing burden of cancers. Priorities for cancer research include epidemiology and etiology of cancer and a focus on population-based registry for unique populations in Uganda and strengthening cancer surveillance systems. Conclusion This study highlights the importance of an engaged approach based on Participatory Action Research theory to identify problems. Through this approach, the research team was able to accurately understand the research context, identify research issues, and priorities. Priorities for cancer research identified by this study include epidemiology and etiology of cancer, including the incidence studies and geographical mapping of these cancers, conducting cancer disease surveillance at the landing site and investigating the contribution of the locally available foods and environment to cancers. There is need for community sensitization and screening for cancers in the entire region. Involvement of community team leaders such as village health teams (VHTs), local council I (LCIs), traditional and church leaders in cancer surveillance should be encouraged and the community case definitions of common cancers should be refined and the capacity of the community workers (VHTs) built to detect cancers at community level. Through this preliminary research, the groundwork for science anchored on the realities of the affected people has been firmly laid upon which science can build on to solve the problem in a sustainable and equitable way.