Evidence map›Paper›PMID 41913466›Full record

ArticlePrimary health care research & development2026

Participatory action research to align Health and Demographic Surveillance System (HDSS) priorities with community needs in Uttar Pradesh, India.

Shalini Singh, Raghukul Ratan Pandey, U Venkatesh, Ram Shankar Rath, Anil Ramesh Koparkar, Pradip Kharya, Hariom Pandey, Neetisha Besra, Hari Shanker Joshi, Anand Mohan Dixit and 2 more

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Article in Primary health care research & development, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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5 · Who and what money

Authors and funding

12 authors.

Shalini Singh *Johns Hopkins India, India.
Raghukul Ratan Pandey *Johns Hopkins India, India.
U VenkateshDepartment of Community and Family Medicine, All India Institute of Medical Science, Gorakhpur, India.ORCID 0000-0001-8059-9364
Ram Shankar RathDepartment of Community and Family Medicine, All India Institute of Medical Science, Gorakhpur, India.
Anil Ramesh KoparkarDepartment of Community and Family Medicine, All India Institute of Medical Science, Gorakhpur, India.
Pradip KharyaDepartment of Community and Family Medicine, All India Institute of Medical Science, Gorakhpur, India.
Hariom PandeyDepartment of Medical Health and Family Welfare, Government of Uttar Pradesh, India.
Neetisha BesraJohns Hopkins India, India.
Hari Shanker JoshiIndian Council of Medical Research, Regional Medical Research Centre, Gorakhpur, India.ORCID 0000-0002-1381-4260
Anand Mohan Dixit *Department of Community and Family Medicine, All India Institute of Medical Science, Gorakhpur, India.
Vikasendu Agarwal *Department of Medical Health and Family Welfare, Government of Uttar Pradesh, India.
Brian Wahl *Department of Epidemiology of Microbial Diseases, Yale School of Public Health, USA.ORCID 0000-0002-0037-7364

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundParticipatory 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.

methodsWe 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.

resultsFive 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.

conclusionsPAR 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.

Indexed as

Community-Based Participatory ResearchHealth PrioritiesPopulation SurveillanceCommunity ParticipationDemographyFemaleFocus GroupsHealth Services ResearchHumansIndiaMaleResource-Limited SettingsRural PopulationCivic sciencecommunity engagementHealth and Demographic Surveillance Systemparticipatory research

Identifiers

PMID41913466
PMCPMC13080540

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