Superfund Research Program
February 2019
Environmental health science professionals came together to discuss reporting back research results at the annual NIEHS Partnerships for Environmental Public Health (PEPH) meeting, held Dec 13-14. Among the participants, members of several Superfund Research Program (SRP)-funded Centers shared their experiences and tools focused on reporting research results back to study participants. According to an NIEHS story, the meeting reflected a critical need to ensure that individuals and communities that are part of a research study have access to their data and information on what it means for their health.
Julia Brody, Ph.D., executive director of the Silent Spring Institute and Northeastern SRP Center partner, described how reporting back can be a source of learning for both community members and researchers.
(Photo courtesy of Steve McCaw)
SRP Health Scientist Administrator Michelle Heacock, Ph.D., led a session highlighting three SRP projects that have been reporting back individual results. The projects addressed unique exposures, as well as distinct cultural contexts, such as working with tribal communities.
Among the presenters in this session, Carmen Velez Vega, Ph.D., of the University of Puerto Rico and Northeastern SRP Center, discussed the continuing collaboration between their SRP Center and the Silent Spring Institute in developing the DERBI Report Back App. The Report Back App was launched on October 15, 2018 to provide a platform for cohort participants in Puerto Rico to directly access their own confidential data as well as cohort-wide research results. Several presenters throughout the meeting referenced the Silent Spring DERBI App and the corresponding Report Back Handbook as models for their own work.
Diana Rohlman, Ph.D., from the Oregon State University SRP Center, and Madeleine Scammell, Ph.D., from the Boston University SRP Center, also presented in the session, providing an overview of their report back projects and highlighting the strengths of the approach they used. They also described surprises and challenges they experienced and shared lessons learned.
In another session, Caroline Armijo, a ninth generation native of Stokes County, North Carolina, shared her perspective on partnering with University of North Carolina at Chapel Hill (UNC) SRP researchers in response to the 2014 Dan River coal ash spill. After contacting the UNC SRP Center to help them understand their exposures and associated health risks, they established the Well Empowered Study to build capacity to prevent exposure to toxic metals in private wells.
University of Washington SRP Center Community Engagement Core coordinator Lisa Hayward led a workshop where she walked participants through the process of effective engagement planning to engage target communities in a research process. She also introduced a range of available tools, resources, and best practices to assist with effective engagement.