Public Health Survey Modernization Community Reports
Respectful Use of Community Reports:
The information in these reports came from communities and should be treated with respect. Respectful use looks like:
- Explicitly acknowledging communities as the source and, in many cases, the owners of the data.
- Using the information in the reports to collaborate with appropriate community-based organizations for the benefit of communities.
- Engaging appropriate community-based organizations in conversation around proper use and interpretation of the information.
Reports are in .pdf format, select the desired report below to view and download.
Modernization Data Projects
Beginning in the spring of 2020, Program Design and Evaluation Services (PDES), a research, design, and evaluation unit with the OHA Public Health Director’s Office, began collaborating with communities to modernize Oregon’s population health data collecting instruments.
PDES worked with community organizations to develop and facilitate small (5-6 person) culturally specific project teams. The Coalition for Communities of Color (CCC) provided key leadership and facilitation of the African American, African Immigrant and Refugee, and Latinx project teams. The Northwest Portland Area Indian Health Board recruited, developed, and led the American Indian/Alaska Native project team. The Oregon Pacific Islander Coalition (OPIC) recruited, developed, and facilitated conversations and community-based data collection for the Pacific Islander project team.
The goals of the project teams varied. The initial goal for the CCC and NPAIHB project teams was to review data, conduct participatory analyses, and collect additional data to provide context. OPIC’s Pacific Islander Data Modernization Project (PIDM) goal was to establish a community centered methodology to collect original data. All the project teams dove past their original goals to address the roots of inequity in the structures of data collection. They provided a deep community-centered critique of the purpose, design, and implementation of the surveys and developed a set of actionable recommendations for OHA for authentically engaging with communities through all phases of the data life cycle from design through analysis and dissemination.
Key Lessons Learned
Working with the community-based individuals, leaders, and researchers on data modernization revealed several lessons that are important for OPHD to consider as it moves forward in further engaging communities in modernization efforts:
- Collaboration with community partners through all phases of the data life cycle is essential for improving the representativeness and validity of our data systems and reporting.
- Fund community partners directly and sufficiently for their time and expertise. This includes compensation for adult and youth partners.
- Build budgets and timelines to allow sufficient time and resources for relationship building (e.g., paying community members for their time at each stage)
- Communicate regularly and be transparent with community partners (e.g., share datasets, budgets, internal decision-making processes, legal responsibilities).
- Share power with community partners (e.g., share power with community research partners to review data projects to assure protections of participants).
- Be flexible, willing to recognize mistakes and change course.
- Avoid overburdening community partners.
- Build organization-wide commitment and infrastructure to support staff and programs to advance equity and undo structural racism endogenous to surveillance systems by collaborating with community partners through all phases of the data life cycle.
Ongoing Survey Modernization Efforts: 2022-2023
The results and lessons learned from the initial survey modernization efforts have led to the following ongoing work this biennium:
Disseminating the survey modernization results to the Oregon Public Health Advisory Board, Oregon Public Health Division and survey leadership, state and tribal health programs, tribal leaders, community partners, and federal government.
State-wide Data Collection. Facilitating discussions with the Oregon BRFSS leadership about developing the infrastructure and processes to engage communities in designing statewide, locally funded adult surveys (e.g., state BRFSS). Creating and implementing REALD and SOGI data collection guidance.
- Establishing and engaging a youth-led, diverse, statewide
Youth Data Council to improve the 2022 Student Health Survey, with support from community partners. The Youth Data Council will receive training; make recommendations to improve the survey process, content, messaging, and reporting (e.g., interactive data dashboard); and explore other data sources to provide context and actionable data.
Coordinating with the Epidemiology and Laboratory Capacity (ELC) funding on examining the broader impacts of COVID-19. For that project, OPHD has $1 million to fund BIPOC community researchers and public health leaders to lead the development of a state data system for tracking a broader set of measures (e.g., SDOH, mental health) in a culturally responsive way to be prepared for future pandemics and to inform the statewide health improvement plan. Such a system might use existing data sources, as well as include primary data collection.