Engaging Antiracist And Decolonial Praxis To Advance Equity In Oregon Public Health Surveillance Practices.

Public health surveillance and data systems in the US remain an unnamed facet of structural racism. What gets measured, which data get collected and analyzed, and how and by whom are not matters of happenstance. Rather, surveillance and data systems are productions and reproductions of political priority, epistemic privilege, and racialized state power. This has consequences for how communities of color are represented or misrepresented, viewed, and valued and for what is prioritized and viewed as legitimate cause for action. Surveillance and data systems accordingly must be understood as both an instrument of structural racism and an opportunity to dismantle it. Here, we outline a critique of standard surveillance systems and practice, drawing from the social epidemiology, critical theory, and decolonial theory literatures to illuminate matters of power germane to epistemic and procedural justice in the surveillance of communities of color. We then summarize how community partners, academics, and state health department data scientists collaborated to reimagine survey practices in Oregon, engaging public health critical race praxis and decolonial theory to reorient toward antiracist surveillance systems. We close with a brief discussion of implications for practice and areas for continued consideration and reflection.

Centering Communities of Color in the Modernization of a Public Health Survey System: Lessons from Oregon.

Context: Public health survey systems are tools for informing public health programming and policy at the national, state, and local levels. Among the challenges states face with these kinds of surveys include concerns about the representativeness of communities of color and lack of community engagement in survey design, analysis, and interpretation of results or dissemination, which raises questions about their integrity and relevance. Approach: Using a data equity framework (rooted in antiracism and intersectionality), the purpose of this project was to describe a formative participatory assessment approach to address challenges in Oregon Behavioral Risk Factor Surveillance System (BRFSS) and Student Health Survey (SHS) data system by centering community partnership and leadership in (1) understanding and interpreting data; (2) identifying strengths, gaps, and limitations of data and methodologies; (3) facilitating community-led data collection on community-identified gaps in the data; and (4) developing recommendations. Results: Project team members' concerns, observations, and critiques are organized into six themes. Throughout this engagement process, community partners, including members of the project teams, shared a common concern: that these surveys reproduced the assumptions, norms, and methodologies of the dominant (White, individual centered) scientific approach and, in so doing, created further harm by excluding community knowledges and misrepresenting communities of color. Conclusions: Meaningful community leadership is needed for public health survey systems to provide more actionable pathways toward improving population health outcomes. A data equity approach means centering communities of color throughout survey cycles, which can strengthen the scientific integrity and relevance of these data to inform community health efforts.

"Getting me back on track": the role of outreach interventions in engaging and retaining people living with HIV/AIDS in medical care.

This qualitative study investigated the process of engagement in HIV medical care from the perspective of people living with HIV/AIDS (PLWHA). In-depth interviews were conducted with 76 participants in six cities. All participants were considered underserved because of histories of substance use, mental illness, incarceration, homelessness, or cultural barriers to the traditional health care system. A semistructured interview guide elicited narratives related to health care and the role of program interventions in facilitating access to care. Data analysis revealed that participants cycled in and out of care, a process that was influenced by (1) their level of acceptance of being diagnosed with HIV, (2) their ability to cope with substance use, mental illness, and stigma, (3) their health care provider relationships, (4) the presence of external support systems, and (5) their ability to overcome practical barriers to care. Outreach interventions played a role in connecting participants to care by dispelling myths and improving knowledge about HIV, facilitating access to HIV care and treatment, providing support, and reducing the barriers to care. The findings suggest that outreach programs can interrupt this cyclical process and foster sustained, regular HIV care for underserved PLWHA by conducting client-centered risk assessments to identify and reduce sources of instability and improve the quality of provider relationships; implementing strategies that promote healthy practices; creating a network of support services in the community; and supporting adherence through frequent follow-ups for medication and appointment keeping.