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

BACKGROUND: Although there is increasing interest in reporting results of environmental research efforts back to participants, evidence-based tools have not yet been applied to developed materials to ensure their accessibility in terms of literacy, numeracy, and data visualization demand. Additionally, there is not yet guidance as to how to formally assess the created materials to assure a match with the intended audience. METHODS: Relying on formative qualitative research with participants of an indoor air quality study in Dorchester, Massachusetts, we identified means of enhancing accessibility of indoor air quality data report-back materials for participants. Participants (n = 20) engaged in semi-structured interviews in which they described challenges they encountered with scientific and medical materials and outlined written and verbal communication techniques that would help facilitate engagement with and accessibility of environmental health report-back materials. We coupled these insights from participants with best practice guidelines for written materials by operationalizing health literacy tools to produce accessible audience-informed data report-back materials. RESULTS: The resulting data report-back materials had a 7th -grade reading level, and between a 4th -8th grade level of overall document complexity. The numeracy skills required to engage with the material were of the lowest demand, and we incorporated best practices for risk communication and facilitating understanding and actionability of the materials. Use of a rigorous assessment tool provides evidence of accessibility and appropriateness of the material for the audience. CONCLUSIONS: We outline a process for developing and evaluating environmental health data reports that are tailored to inspire risk-reduction actions, and are demonstrably accessible in terms of their literacy, numeracy, and data visualization demand. Adapting health literacy tools to create and evaluate environmental data report-back materials is a novel and evidence-based means of ensuring their accessibility.

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

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.