DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results

Abstract

Summary:Researchers and clinicians in environmental health and medicine increasingly show respect for participants and patients by involving them in decision-making. In this context, the return of personal results to study participants is becoming ethical best practice, and many participants now expect to see their data. However, researchers often lack the time and expertise required for report-back, especially as studies measure greater numbers of analytes, including many without clear health guidelines. In this article, our goal is to demonstrate how a prototype digital method, the Digital Exposure Report-Back Interface (DERBI), can reduce practical barriers to high-quality report-back. DERBI uses decision rules to automate the production of personalized summaries of notable results and generates graphs of individual results with comparisons to the study group and benchmark populations. Reports discuss potential sources of chemical exposure, what is known and unknown about health effects, strategies for exposure reduction, and study-wide findings. Researcher tools promote discovery by drawing attention to patterns of high exposure and offer novel ways to increase participant engagement. DERBI reports have been field tested in two studies. Digital methods like DERBI reduce practical barriers to report-back thus enabling researchers to meet their ethical obligations and participants to get knowledge they can use to make informed choices.

Serum concentrations of PFASs and exposure-related behaviors in African American and non-Hispanic white women

“…Data on behaviors hypothesized to influence PFAS exposure were collected between July 2015 and April 2016 as a part of the MyCHDSReport Study. Women were interviewed before and after receiving a report showing individual or aggregate biomonitoring results for several classes of environmental chemicals along with contextual information about the chemicals and overall findings from the study [39]. The behavioral data presented here are from the pre-interview (before participants received their results report).…”

Comprehension and perceptions of study participants upon receiving perfluoroalkyl substance exposure biomarker results

“…Report back protocols vary significantly between studies, and the amount of community involvement in developing protocols also varies (Brody et al, 2014; Exley et al, 2015; Morello-Frosch et al, 2009). Several studies have addressed the community engagement process for developing the method of returning results (Haynes et al, 2016), the best format for the actual report (Boronow et al, 2017; Lakind et al, 2008; Morello-Frosch et al, 2009), or the resulting changes in behavior (Wu et al, 2009). Community meetings to return results may increase participant understanding but often reduce the number that receive the information due to low attendance (Wu et al, 2009).…”

Reporting to parents on children’s exposures to asthma triggers in low-income and public housing, an interview-based case study of ethics, environmental literacy, individual action, and public health benefits

“…Parents of the children in the study received two report-back packets, one during a home sampling visit and one by mail or at a community meeting. Reports integrated input by GHS and the Personal Report-back Ethics (PERE) Study teams, based on best practices in health communication, testing of prototypes with residents of the Boston study neighborhood, and previous research on report-back [ 18 , 22 ]. Reports included personalized results graphs, text summaries, and information about exposure reduction, chemical sources, and health.…”

“…Reports included personalized results graphs, text summaries, and information about exposure reduction, chemical sources, and health. The second report, which included results for environmental chemicals, was personalized using DERBI, the Digital Exposure Report-back Interface [ 22 ]. An example results graph from the second report is shown in Fig.…”