BOX 5-1Select Engagement and Communication Practices for the Return of Research Results in Environmental Health
CANADIAN HEALTH MEASURES SURVEY (CHMS)
This environmental exposure study used peer-test focus groups to determine that the return of results was a primary motivation for participation. CHMS personnel met with local public health officials prior to data collection with information about the study and its possible results. Local doctors were asked to reach out to these public officials for advice or support if their patients came to them with research results. The return-of-results communication plan was developed in collaboration with the CHMS Laboratory Advisory Committee, Physician Advisory Committee, and the reference laboratory. Individuals could choose whether they wanted to receive results, but if something of concern was discovered during testing, the participant would receive a written notice asking whether he or she wished to learn about a result of interest or concern. Results that were above the population reference range were flagged for return. When requesting results, participants received a disclaimer noting that, given the current state of scientific knowledge, it was not possible to provide an interpretation of individual risk. Information about health risks, dose–response relationships, and intervention strategies was uncertain or not available for most variables measured (Haines et al., 2011).
LA FAMILIA STUDY
This community-based participatory research study sought to address likely challenges, such as explaining the uncertain health significance of data where action levels have not yet been set by the Centers for Disease Control and Prevention (CDC). Researchers reviewed existing risk communication strategies, networked with more experienced investigators, sought the community's input, and assessed local health literacy and numeracy. The return-of-results communication plan was approved by the university's institutional review board (IRB) and used face-to-face meetings between study staff and the participant for the delivery of results. Participants were given their results in comparison to results from other households and given information about the health impacts of pesticide exposure and information about environmental abatement and exposure prevention (Quandt et al., 2004).
GROWING UP FEMALE
During the consent process, the child participants were informed that elevated blood sugar, insulin, blood pressure, and cholesterol would be reported back to their parents and that “the investigators will tell you about significant new findings developed during the course of the research and new information that may affect your health, welfare, or willingness to stay in this study” (Hernick et al., 2011, p. 2). Participants and their guardians were not told which biomarkers would be analyzed. During the data collection phase, the CDC alerted the investigators that there were elevated perfluorooctanoic acid (PFOA) levels among a specific cohort of participants. Researchers searched the literature to better understand the potential risk of elevated PFOA and what follow-up should be conducted. The investigators also sought advice from environmental health research organizations and researchers with experience reporting biomarker results to participants. The IRB was notified that new results were going to be returned, given a description of the communication plan, and provided with copies of all materials to be distributed to families. The communication plan included presentations, an informational packet, a visual depiction of results, a summary of study findings, a glossary, FAQs, contact information for a phone line for questions, and a press release. Families were invited (both in written form and over the phone) to family meetings. The primary investigator and a physician known by the families presented a study update and the cohort's biomarker results, including a comparison of the cohort's PFOA results with national data and data from other cohorts in other parts of the country. Families then received the individual serum and urine biomarker reports for their children. The primary investigator and other researchers facilitated one-on-one or small group discussions of the results (Hernick et al., 2011).
