Participatory action research to align Health and Demographic Surveillance System (HDSS) priorities with community...

Participatory action research (PAR) methods effectively engage communities in identifying health priorities in low-resource settings. This study applied PAR methods during the establishment of a Health and Demographic Surveillance System (HDSS) in Gorakhpur, Uttar Pradesh, India.

We implemented seven PAR methods across rural and urban populations: transect walks, resource mapping, social mapping, seasonal mapping, focus group discussions, semi-structured interviews, and community ranking exercises. Data were collected in September 2023 following facilitator training. Visual materials and field notes were thematically categorized, while audio-recorded interviews were transcribed, translated, and analysed with combined inductive-deductive thematic analysis. Community health priorities were quantitatively analysed through free listing, pile sorting, and ranking.

Five major themes emerged: (1) Community context revealed diverse caste compositions and essential infrastructure; (2) Health priorities included acute conditions (fever, joint pain), chronic diseases (hypertension, diabetes), healthcare access limitations, and WASH issues; (3) Key contributors to poor health encompassed inadequate WASH facilities, limited health awareness, and discrimination; (4) Healthcare access barriers included absent primary care facilities, financial constraints, limited transportation, and poor service quality; (5) Community suggestions addressed both social determinants and healthcare services, emphasizing governance participation, WASH interventions, and improved healthcare infrastructure.

PAR methods successfully identified community-defined health needs and barriers, demonstrating consistency across urban and rural settings. Community members provided concrete recommendations for health system improvements, validating the importance of incorporating local voices in HDSS design. The alignment between community priorities and documented regional health challenges underscores how participatory methods can shape surveillance activities to foster sustainable health improvements and enhance governance capacities. These insights directly informed HDSS operational plans, creating a foundation for responsive and equitable health surveillance systems.