NIEHS-Funded Researchers Fine Tune Report-Back Materials for People Exposed to Environmental Chemicals

Researchers at Oregon State University and Baylor University worked with participants of a chemical exposure assessment study to determine how to report back the research results in a way that was meaningful and accessible. All study participants expressed a desire to receive their exposure results.

The research team conducted focus groups with residents of several Houston neighborhoods who participated in the Houston Hurricane Harvey Health (Houston-3H) study, which provided participants with silicone wristbands to track their chemical exposures around the time of the hurricane.

Participants told the researchers that they wanted to know what various exposures meant for their health. Because health effects due to exposures are not always known and many chemicals do not have a known “safe” level, it can be challenging to show how certain exposures may affect someone’s health. Despite this limitation, focus group members appreciated learning about the chemicals they were exposed to and ways in which they could reduce exposure.

The participants also conveyed preferences about report layout, such as succinct text and graphical aids. A September 2023 paper describes the focus groups and provides valuable insights into how teams conducting community engaged research can structure their report-back materials to most effectively inform participants of research results.

“A key part of community-engaged research is reporting back results to participants,” stated Diana Rohlman, Ph.D., lead investigator on the focus groups. “Doing so in ways that are most accessible and effective is critical. With this study, we wanted to look at how we displayed the results, to ensure they made sense and helped answer community questions about their exposures.”

Conducting Focus Groups on Personal Exposure Reports

The Houston-3H study was conducted in response to concerns about possible health effects from chemical exposures following flooding from Hurricane Harvey. Houston-3H ran from 2017 to 2018.Researchers collected exposure samples through silicone wristbands worn by 312 participants at two weeklong timepoints, the first within 45 days of the hurricane and the second a year later. All participants requested to receive their results, and of the 312 Houston-3H participants, 31 joined the focus groups. In conducting the focus groups, the researchers were interested in participant feedback about the study’s exposure reports, including layout, types of data included, and language used. Focus groups represented four Houston neighborhoods and were conducted at locations central to those areas.

Researchers provided focus group participants with a sample report that included both community-level results and individual exposure results. Community-level reports included an overall update on the study and its results, including average exposures and key summaries of overall results. Individual-level reports included exposure results broken down into categories by chemical types, such as endocrine disruptors and flame retardants.

Focus group participants reflected on four topics:

• Concern about exposure to chemicals and how exposure may affect health.
• Report layout, including the use of colors, images, and language level.
• Participant level of trust of the research or researchers.
• Ability to understand environmental health information.

In response to the community-level report, participants said graphics helped make the information easier to understand. Focus group members especially appreciated sections that summarized results into “take-home messages.” They were most interested in exposure levels in their neighborhoods and showed the least interest in information about the hurricane’s environmental impacts, such as how many local Superfund sites were flooded.

In the individual-level reports, participants preferred dot plots over bar graphs. They thought these graphics were more personalized and easier to understand. Additionally, less text helped graphical elements stand out.

Participants suggested changes to the reports, including adding a glossary to better enable readers to understand environmental health terminology. They also raised concerns about the extent of data presented in the individual-level reports. Houston-3H measured 1,530 chemicals, making graphs and chemical information complex. Participants also requested explanations about why certain chemicals were selected for measurement while others were excluded.

“The most common request was to compare a person’s data to regulatory levels. Unfortunately, we do not have health guidelines or regulatory standards for most of the chemicals we study. That means we cannot tell a person if their exposures are high or low, of concern, or below levels of concern,” reflected Rohlman. “Based on participant feedback, this is something we try to communicate even more clearly. The information we are collecting still has value to participants, so we are now trying to show results in this context and describing what we do and do not know about these exposures.”

Designing Exposure Reports Based on Feedback

The research team incorporated focus group feedback when designing the final Houston-3H exposure reports. They significantly reformatted the final reports to have clearer graphics with detailed descriptions. They emphasized take-home messages and provided more details on types of chemicals and addressed feedback on terminology to clearly define new terms.

Several key lessons emerged from the focus groups. For example, community members would like to know their exposure results despite the unknowns about what the exposures might mean to health. In support of this, researchers should be transparent about the knowns and unknowns of exposure science and regulatory information. Additionally, reports should be formatted to be accessible to a general audience. Graphics help make data more understandable and should include concise descriptions. Finally, community members’ knowledge should be respected and considered when developing materials.

“Our goal in doing this work is always to provide research results in a way that people can learn from and use the results in their own life,” added Rohlman. “By working with study participants directly, we were able to make the reports more accessible, and we learned how to present the data to address community questions and concerns.”