Jul 2026· International Journal of Population Data Science· Vol 11· 0 citations
Medicine
Abstract
Objective Outside recognized Indigenous Data Governance Principles, there is a growing movement towards community governance of other demographic data. Community governance seeks to recenter decision-making about how data are used and reported with those who are the subject of the data, but broad understanding on how to operationalize this principle is lacking. We sought to develop a community-guided governance approach for the use of immigration data at ICES, a health data institute which holds administrative health and demographic data for the province of Ontario, Canada. Approach Community perspectives to guide our approach were gathered using semi-structured focus groups. 36 individuals were recruited using purposive and snowball sampling based on their lived or professional expertise in immigration. Results Key recommendations emerged from the discussions, including 1) clearly delineating which research projects would require community engagement; 2) emphasizing the need for reciprocity in community relationships; 3) building researchers’ capacity in critical reflexivity and data contextualization; 4) developing an organizational change management strategy to socialize expectations; and 5) establishing an intersectionally diverse Community Governance Advisory Table to guide and oversee the approach. Conclusion These discussions highlighted tangible operational considerations, including the importance of engagement with immigrant communities and of change management when implementing structural-level change to organizational processes. We will employ a participatory approach to further develop and operationalize community members’ recommendations.
Health disparities arise from unequal power relations shaping resource allocation, governance, and community agency. Community power is a key mechanism for addressing disparities. This study examines how visible, hidden, and invisible power operate within a U.S. county to inform inclusive governance. We conducted seven focus groups with Black and Hispanic residents (n = 68) and sixteen semi-structured interviews with elected officials, government staff, and advocacy leaders in Greenville County, South Carolina. Data were collected between March and December 2024. Transcripts were collaboratively coded in NVivo and analyzed using thematic analysis guided by Heller et al.'s Three Faces of Power framework. Visible power appeared through inequitable resource distribution, limited transparency, and barriers to civic participation. Hidden power functioned through faith based organizations, schools, nonprofits, and social media, connecting residents with decision makers. Invisible power reflected how socioeconomic status, race and ethnicity, immigration, and language shaped perceptions of agency and trust. Participants called for participatory structures that move beyond consultation toward shared authority and sustained engagement. Strengthening community power through structural reforms, inclusive governance practices, and targeted civic engagement may improve health outcomes and reduce disparities. Future research should examine scalable co-governance models.
Shaniece Criss, Roger Abim-Karmon, Jody Teel et al.· Journal of community health· 0 citations
This study examined community participation as a catalyst for effective local health governance, focusing on
Constituency Development Fund (CDF)-funded maternal and child health interventions in Vubwi Constituency, Zambia.
The study was motivated by concerns that despite decentralisation reforms and the introduction of the CDF, community
involvement in health-related decision-making remains limited and largely symbolic. A qualitative case study research
design was adopted, and data were collected from a sample of 30 participants, including health facility staff, CDF committee
members, local leaders, and community members, using interview guides and focus group discussion guides. Thematic
analysis was employed to analyse the data, guided by Arnstein’s Ladder of Citizen Participation theory.The findings
revealed that community participation in CDF health interventions is generally constrained and procedural, with key
decisions often made by local elites and political actors before community consultations occur. In addition, governance
structures were found to be dominated by influential individuals, resulting in limited inclusiveness and reduced
transparency in decision-making processes. The study further established that monitoring and accountability mechanisms
are weak and largely exclude community members, while limited awareness and capacity constraints hinder meaningful
participation. However, occasional instances of effective engagement were observed where leadership was responsive and
participatory structures functioned effectively. The study concludes that although formal participatory structures exist
within the CDF framework, their effectiveness in promoting genuine community involvement remains limited in Vubwi
Constituency. It recommends strengthening inclusive decision-making processes, enhancing civic education, improving
accountability mechanisms, and reducing elite dominance in governance structures. Strengthening these areas is essential
for improving transparency, ownership, and sustainability of maternal and child health interventions under the CDF
framework.
John Augustine Chanda, Alex Mugala· International Journal of Inn...· 0 citations
Objective Communities who are the subject of administrative health and demographic data often encounter challenges accessing their own data and related analytic services, but achieving equitable access to data and analytic services is emerging as a crucial facet of ethical data stewardship, enabling communities to directly translate insights into real-world impact. As part of its mandate as a data institute, ICES offers organizations in Ontario (Canada) access to data analytics to support service planning and evaluation. Though community organizations are eligible, they accounted for only 2.4% of projects before 2023. To address this gap, we launched a community engagement and co-development process to increase service awareness and simplify access. Approach We conducted a two-pronged needs assessment: environmental scan and seven key informant interviews based on purposive sampling. We then co-developed promotional materials with two other community members, and pilot-tested drafts with focus groups that included a mix of previous and new key informants (eight in total). Results The needs assessment revealed the importance of developing materials using plain language, storytelling, messaging on impact, and trusted messengers. Products developed included a testimonial video showcasing previous community projects, a plain language webpage, and a 3-year dissemination strategy centered on building trusting relationships. Conclusion Intentional needs assessment and embedded co-design approaches revealed the importance of narrative, plain, and impact-focused communication, leading to a novel suite of communication tools. Implications: Ongoing evaluation of these new approaches will be used to continue to refine promotion strategies as well as potentially tailor or expand future services.
Elise Leong-Sit, Laura Ferreira-Legere, B. Khan et al.· International Journal of Pop...· 0 citations
Against a backdrop of increasing political, economic, and ecological volatility, participatory governance could provide a valuable mechanism to counteract democratic backsliding caused by unchecked power and regulatory capture. Food systems in particular are a site where many interests and sectors converge—including health, agriculture, land use, labor, environment, and climate change—and where there has been increasing interest and experimentation in forms of participatory governance. This research uses the example of the organic standards governance process to understand how governance structures can enable transitions to more sustainable and just systems (including but not limited to food systems), and what we can learn from existing participatory governance approaches about how to govern complex systems in a collaborative and inclusive way. We conducted 20 semi‐structured interviews with individuals who have participated in recent organic standards review processes and analyzed key documents to characterize the sources and arenas of power at play. We found that formal authority and discursive legitimacy are enabling some participants to maintain influence at a time when increasing professionalization and resource‐based power would otherwise dominate the process. In particular, the processes in place to ensure opportunities for public comment, diverse sector representation, and limited political influence all contribute to a collaborative, participatory process. At the same time, the organic sector is facing significant challenges due to the high costs of administering such a labor‐intensive process, a lack of consistent funding, and the imminent closure of the Canadian General Standards Board as an institutional structure to support the organic standards review process. Despite these challenges, the governance of the Canadian organic standards has been a robust and unique instance of participatory governance that merits continued support.
Amanda D. Wilson, Susanna Klassen, Abra Brynne· Regulation & Governance· 0 citations
The participatory data governance (PDG) framework is introduced, which operationalises data governance into four key elements and provides an analytical tool to examine how and to what extent community members influence decision-making on the data systems that shape their lives.
Marie-Louise Wijne· Information Technology for D...· 0 citations
Use of population and administrative data has intensified ethical scrutiny around data security, representativeness, and research validity. Public trust has been weakened by data misuse, limited transparency, and poor alignment with community priorities. Existing engagement approaches are often inadequate for data-intensive environments where public roles and effective engagement remain poorly understood. In response, UK partners across disciplines and sectors established the Public Engagement in Data Research Initiative (PEDRI) and co-developed Good Practice Standards for Public Engagement in Data for Research and Statistics, alongside a public pledge. A PEDRI Frontiers meeting in June 2025 convened 60 stakeholders from government, regulation, industry, academia, community organisations, and the public. Participants compared the Standards with frameworks in their fields, examining their relevance to different publics and communities and highlighting strong alignment. Discussions focused on public engagement in statistics, administrative data, equity, diversity and inclusion, industry research, and artificial intelligence. This presentation will explore key insights, including evidence that involving the public as active partners in data use increases the relevance and impact of research while enabling communities to influence agendas and secure meaningful benefits. Definitions of “the public” vary across sectors and often require a broader, needs-based focus on what end users value. Participants mapped the Standards to existing frameworks in ethics, psychology, anthropology, political theory, and communication science. Cross-disciplinary mapping revealed trust as foundational, spanning transparency, accountability, and reciprocal benefit. The PEDRI Standards are enabling more democratic, effective, and socially accountable approaches to public engagement in data research.
Doreen Tembo, Samaira Khan, K. Porter et al.· International Journal of Pop...· 0 citations
