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

Abstract

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.

Figure 1

(A) During a typical user experience, participants first see their notable exposure results (headlines) on the Summary page. (B) Clicking on a chemical name takes them to more information about that chemical group, including exposure sources, health effects, options for taking action, and complete results. Chemical pages include personalized graphs that depict a participant’s chemical level in the context of the study distribution. (C) Digital features like explanatory pop-ups help people interpret the information-rich plots. (D) Participants can find more tips for reducing their exposure in the “What You Can Do” section. Other sections of the report include “Health Concerns” and “Overall Study Results” (not shown). To view an example web-based Digital Exposure Report-Back Interface (DERBI) report, see http://silentspring.org/research-area/digital-exposure-report-back-interface-derbi (Silent Spring Institute 2016).

Figure 2

The Digital Exposure Report-Back Interface’s (DERBI) data visualization tool displays exposure distributions for the entire study and can help identify patterns. Clicking one point connects all the exposures belonging to a single participant in red, while dragging the blue box around multiple points dynamically highlights groups of participants. The vertical axis indicates concentration. In this example, showing optionally log-transformed and normalized data with non-detected values represented at zero, (A) participants highly exposed to PCB28 but not to more highly-chlorinated congeners likely have an exposure source in their home or workplace, such as old window caulk or electrical equipment, while (B) participants with the inverse pattern are likely primarily exposed to PCBs through their diet.