Bridging the gap between research and policy is crucial to creating evidence-based policies that improve health and social outcomes. As a health data steward holding administrative health data in Ontario, Canada, existing relationships between health data researchers and policymakers were well established at ICES but often lacked transparency and broader visibility. To understand these relationships in practice, we mapped the engagement process, including its policy implications and identified researcher and organizational attributes that fostered meaningful engagement. Using an environmental scan and key informant interviews, we explored how ICES engages with policymakers at the project, program, and organizational levels. Eight case studies were identified, and interviews were conducted with project leads to understand the nature of the engagements and discuss challenges and opportunities to improve engagement. The project identified two primary pathways for policy engagement, 10 core themes, and several researcher and organizational facilitators and barriers. Key themes that emerged included the importance of fostering relationships early, the need for a flexible research program structure to respond to dynamic policy needs, and the reciprocal value of partnership with patient advocacy groups and community organizations. We will leverage our project findings to develop capacity-building resources for researchers wishing to engage policymakers more effectively. This project highlights key areas for researchers and organizations to strengthen policy engagement in research. Understanding how relationships among researchers, research organizations, and policymakers are established and sustained is essential to strengthening evidence-to-policy engagement.
Sabella Yussuf-Homenauth, Laura Ferreira-Legere, J. Michael Paterson et al.· International Journal of Pop...· 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
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.
Elise Leong-Sit, Laura Ferreira-Legere, Astrid Guttmann et al.· International Journal of Pop...· 0 citations