Communicating environmental exposure results and health information in a community-based participatory research study

Luz Claudio, Jalisa Gilmore, Mohana Roy, Barbara Brenner

Communicating results to participants is a fundamental component of community-based participatory research (CBPR). However, in environmental exposure studies this is not always practiced, partly due to ethical concerns of communicating results that have unknown clinical significance. Growing Up Healthy was a community-based participatory research study that sought to understand the relationship between environmental exposures to phthalates and early puberty in young girls. After in-depth consultation with a Community Advisory Board, study investigators provided group summary results of phthalate exposures and related health information to the parents of study participants. Parents' comprehension and knowledge of the health information provided was then assessed through questionnaires. After receiving the information from the research team, responders were able to correctly answer comprehension questions about phthalate exposures in their community, were able to identify ways to reduce exposure to phthalates, and indicated plans to do so. Questionnaires revealed that parents wanted more information on phthalates, and that children's environmental health was an important concern. We conclude that effective communication of exposure results of unknown clinical significance to participants in environmental health studies can be achieved by providing group summary results and actionable health information. Results suggest that there was an improvement in knowledge of environmental health and in risk reduction behaviors in our study population.