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Community Data Is Trusted Evidence

Article by Mira Mohsini & Andres Lopez: “When the Coalition of Communities of Color (CCC) began a multi-year collaboration with the Oregon Health Authority (OHA), they worked together to modernize a critical public health information source: the Oregon Student Health Survey. This survey, disseminated annually across Oregon, was designed to track health trends and inform policy decisions affecting thousands of young people and families.

But there was a problem. Year after year, this survey illuminated inequities, showing, for example, that students of color experienced higher rates of bullying or mental health challenges, without providing any insight into why these inequities existed, how they were experienced, or what communities wanted done about them. The data revealed gaps but offered no pathways to close them.

Working alongside other culturally specific organizations within their coalition and researchers of color in their region, CCC set out to demonstrate what better data could look like for the Oregon Student Health Survey. They worked with high school teachers who had deep relationships with students and met with students to understand what kinds of questions mattered most to them. Simple and straightforward questions like “How are you doing?” and “What supports do you need?” revealed issues that the state’s standardized surveys had completely missed. The process generated rich, contextual data showing not just that systems were failing, but how they were failing and how students desired their needs to be met. The process also demonstrated that working with people with lived experiences of the issues being researched generated better questions and, therefore, better data about these issues.

And the improvements resulting from better data were tangible. OHA created a Youth Data Council, involving young people directly in designing aspects of the next version of the Student Health Survey. CCC documented the survey modernization process in a detailed community brief. For the first time ever, the Oregon Student Health Survey included three open-ended questions, yielding over 4,000 qualitative responses. OHA published a groundbreaking analysis of what students actually wanted to say when given the chance…(More)”

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