MCR: Open-Source Software to Automate Compilation of Health Study Report-Back

Abstract

Sharing individualized results with health study participants, a practice we and others refer to as “report-back,” ensures participant access to exposure and health information and may promote health equity. However, the practice of report-back and the content shared is often limited by the time-intensive process of personalizing reports. Software tools that automate creation of individualized reports have been built for specific studies, but are largely not open-source or broadly modifiable. We created an open-source and generalizable tool, called the Macro for the Compilation of Report-backs (MCR), to automate compilation of health study reports. We piloted MCR in two environmental exposure studies in Massachusetts, USA, and interviewed research team members (n = 7) about the impact of MCR on the report-back process. Researchers using MCR created more detailed reports than during manual report-back, including more individualized numerical, text, and graphical results. Using MCR, researchers saved time producing draft and final reports. Researchers also reported feeling more creative in the design process and more confident in report-back quality control. While MCR does not expedite the entire report-back process, we hope that this open-source tool reduces the barriers to personalizing health study reports, promotes more equitable access to individualized data, and advances self-determination among participants.

A process for creating data report-back tools to improve equity in environmental health

“…This information was presented numerically, graphically, and via personalized text, allowing for different learning styles to access the same information. The verbatim-level section included graphical representations of the data, charts, and personalized text and numerical components [53]. These tailored components included questions personalized to the participant's data points and patterns.…”

“…These tailored components included questions personalized to the participant's data points and patterns. They asked participants to consider typical in-home behaviors potentially associated with the days or seasons with elevated concentrations in a workbook-style [53].…”

“…Specifically, numerical elements included 'reading numbers' , 'reading tables' , and 'reading graphs' [48]. We further reduced the level of mastery required by providing personalized textual interpretation of the graphical and numerical components to assist with numerical interpretation [53].…”

Moving Forward with Reporting Back Individual Environmental Health Research Results

“…Their efforts have aimed to fully engage research participants, 1 , 2 build environmental health literacy, 3 and inform individual and collective action. 4 They have developed ethical frameworks, 5 , 6 practical approaches, 7 and user-friendly tools 8 , 9 for reporting results across a wide domain of environmental health research that involves exposure measurements in biological or environmental samples. The practice of returning individual-level results to research participants, which we refer to here simply as “report-back,” has raised a variety of ethical, 5 , 6 , 10 – 12 practical, 8 , 9 , 11 , 13 , 14 and legal 15 questions.…”

“… 4 They have developed ethical frameworks, 5 , 6 practical approaches, 7 and user-friendly tools 8 , 9 for reporting results across a wide domain of environmental health research that involves exposure measurements in biological or environmental samples. The practice of returning individual-level results to research participants, which we refer to here simply as “report-back,” has raised a variety of ethical, 5 , 6 , 10 – 12 practical, 8 , 9 , 11 , 13 , 14 and legal 15 questions. 5 , 13 To address these questions, research partnerships have engaged in an iterative process of implementing report-back, evaluating processes and outcomes, revising practices, and fielding new research to improve methods and build a generalizable evidence base for report-back methods.…”