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- Title
DERBI: A Digital Method to Help Researchers Offer "Right-to-Know" Personal Exposure Results.
- Authors
Boronow, Katherine E.; Susmann, Herbert P.; Gajos, Krzysztof Z.; Rudel, Ruthann A.; Arnold, Kenneth C.; Brown, Phil; Morello-Frosch, Rachel; Havas, Laurie; Brody, Julia Green
- 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.
- Subjects
PATIENT participation; MEDICAL records; MEDICAL communication; ENVIRONMENTAL health research; RESEARCH ethics; COMPUTER network resources; COMPUTERS; DATABASE management; DECISION making; ENVIRONMENTAL health; INTELLECT; INTERPROFESSIONAL relations; PATIENTS; TECHNOLOGY; RESEARCH personnel; CONTENT mining; HUMAN research subjects
- Publication
Environmental Health Perspectives, 2017, Vol 125, Issue 2, pA27
- ISSN
0091-6765
- Publication type
Article
- DOI
10.1289/EHP702