Show Your Work: Increasing Engagement through Personalized Participant Report-Back.

When assessing potential chemical exposures, environmental health scientists must decide whether and how to share their results with study participants. In several studies, participants have reported wanting to see results; they appreciated and learned from them.[1] However, some researchers and institutional review boards are concerned that report-back might cause participants to feel unduly worried, overwhelmed, or confused about what the results mean.[2] A new study in Environmental Health Perspectives suggests that report-back can be designed to anticipate and prevent such reactions.[3]

DERBI lets users see at a glance how their results compare with other participants’. Images, left to right: © iStockphoto/Valeria Blanc; © 2014 Child Health and Development Studies (CHDS), Silent Spring Institute. Reprinted with permission.

The study included 295 women from the Child Health and Development Studies (CHDS), a large, multigenerational cohort that enrolled more than 15,000 families from the East Bay Area in California between 1959 and 1967 and continues to this day. Participants in the new study, who were in their 40s and 50s, were daughters of the first CHDS cohort. Approximately half these women identified as Black. The authors assessed how participants responded to receiving aggregate versus more individualized results. They also compared the experiences of Black and non-Black participants, given that Black individuals have historically had a relatively negative—and sometimes traumatic—experience of participating in research studies.[4]

CHDS collected and analyzed blood samples for concentrations of lipids and 42 chemicals. Participants received either an aggregate report that showed collective results from the study or a personal report with both individual and collective results. The researchers delivered the reports using the Digital Exposure Report-Back Interface (DERBI),[5,6] a user-friendly web portal interface that generates easy-to-read personalized reports. DERBI also provides information about sources of exposure for the chemicals, potential health effects, and ways to reduce exposure. This is the first study to evaluate report-back with DERBI.

Participants were surveyed before and 3–4 weeks after receiving their exposure reports. Participants who received personal results spent roughly twice as long reviewing their reports online as those who received only aggregated information. Among women who received personalized results, more non-Black participants viewed all the report pages with details about the chemicals identified in their samples, and they spent a median of 3.1 minutes longer online than Black participants. Among women who received aggregate results only, non-Black participants spent 8.3 minutes longer online than Black participants.

Between 68% and 93% of participants reported moderate to very strong levels of positive feelings—interested, respected, curious, informed—about receiving reports. A majority (57–69%) felt at least moderately empowered by the results. Negative feelings—helplessness, worry, fear—were low, with 72–96% of participants reporting mild, very mild, or no such feelings. Not surprisingly, personalized reports indicating higher chemical levels sparked more concern in the post-interview. A small group of women expressed feeling scared and worried after learning they had high levels of some chemicals, concerns that were slightly stronger among Black participants.

“Feelings of worry increased a small but significant amount between the pre- and post-interviews, and the increase was greater for participants who received personal results,” says Julia Brody, executive director and senior scientist at the Silent Spring Institute and the paper’s lead author. “These results make sense to me because people are learning about chemical contamination that is directly relevant to them. From a public health standpoint, the realization that ‘pollution is personal’ can be a plus for motivating people to take action to reduce harmful exposures.”

As to why Black participants spent less time on their reports than non-Black participants, Brody believes the most likely explanations have been identified in earlier research. “Past studies[7] have found that Black people’s participation in research is affected by competing time demands, influenced by the effects of structural racism on working conditions, family caretaking responsibilities, and limited financial resources.” Brody says earlier studies also documented mistrust stemming from racist research abuses in the past, leading some Black people to believe research will only benefit White people or that results reports will not be relevant and helpful to them.[7]

“The design was rigorous and innovative in a way that facilitated the testing of individual versus aggregate report-back of chemical exposures, and assessing differences across racialized/ethnic groups,” says Rachel Morello-Frosch, a professor of environmental science, policy, and management at the University of California, Berkeley. “In addition, the [CHDS results report] was designed with input from participants themselves … which ensured that the materials were appropriate for the study community.”

Morello-Frosch, who was not involved in the research, adds that the study highlights how researchers can communicate results to their own participants in ways that advance environmental health literacy, reduce worry, and highlight opportunities to reduce exposures. “Interestingly,” she says, “report-back did not affect participants’ willingness to participate in future surveys or to provide more biospecimens.”

That said, Brody and colleagues point out that CHDS participants are already highly engaged in the study, a level of engagement that the cohort investigators have actively cultivated. The authors note that future studies should assess whether participants in other studies who have had less engagement up front would respond as positively to receiving study results.

Although not a participant in the present study, Lieutenant Heather Buren, a firefighter with the San Francisco Fire Department and co-principal investigator on the Women Firefighters Biomonitoring Collaborative Study,[8] has received chemical exposure results with a DERBI report. “I loved the interactive and directed nature of DERBI,” says Buren. “The personal headings and ability to research each chemical, if I was interested, was important for my understanding of my exposure history. The DERBI interface is a superior means to report biomonitoring results to participants.”