Community and stakeholder engagement in national priority setting and participatory research for HIV, Tuberculosis, and Malaria programs in Nepal

Background: Following Nepal’s transition to a federal governance system under the 2015 Constitution and the COVID-19 pandemic, the Country Coordinating Mechanism (CCM) led a participatory process to identify national priorities for HIV, Tuberculosis (TB), and Malaria programs. The primary objective of this study was to analyze, in collaboration with community partners, the community and stakeholder engagement processes involved in priority setting. Methods: Between January and June 2020, a qualitative study was conducted, including a series of community group discussions across all seven provinces and 72 municipalities. This qualitative documentation process involved over 2,000 participants across 700 sessions across all three tiers of governance. These sessions included key and vulnerable people affected by TB and HIV, as well as at-risk populations for malaria. In addition, 100 key informant interviews were held with government officials, technical experts, and civil society leaders. The analysis used both deductive and inductive methods, with involvement and input from the community stakeholders. Results: The engagement process offered a space for broad and inclusive participation, with most stakeholders involved in priority setting representing key or vulnerable populations. Participants reported that recommendations, such as establishing HIV testing points for migrants at border areas, were later included in national strategic documents. Many of the system gaps identified during multi-stakeholder discussions, including drug stock outs, stigma in care, and human rights and gender related barriers were reflected in national planning processes, indicating perceived influence of the engagement process. Participants also described practical recommendations, including integration of multi-disease diagnostic initiatives (for Tuberculosis and HIV for instance, using single platforms such as GeneXpert) and strengthening community-level surveillance systems, which were considered during strategic discussions. These priorities were reflected in strategic plans and referenced by the partners (e.g. Global Fund, USAID/PEPFAR). The government further pledged 20% domestic co-financing for the programs, contributing to a sense of ownership within Nepal’s federal system. Participants further reported that the process supported transparency, trust and a sense of ownership. Conclusions: CSE helped ensure that national health priorities were grounded in community realities, broadly inclusive and strategically aligned with institutional frameworks. Engaging community members as active partners in data collection, interpretation, and validation reflected the participatory nature of the entire research process. This approach may offer insights for other low- and middle-income countries.