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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-int...

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Autores principales: Polka, Erin, Childs, Ellen, Friedman, Alexa, Tomsho, Kathryn S., Claus Henn, Birgit, Scammell, Madeleine K., Milando, Chad W.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8201126/
https://www.ncbi.nlm.nih.gov/pubmed/34198866
http://dx.doi.org/10.3390/ijerph18116104
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author Polka, Erin
Childs, Ellen
Friedman, Alexa
Tomsho, Kathryn S.
Claus Henn, Birgit
Scammell, Madeleine K.
Milando, Chad W.
author_facet Polka, Erin
Childs, Ellen
Friedman, Alexa
Tomsho, Kathryn S.
Claus Henn, Birgit
Scammell, Madeleine K.
Milando, Chad W.
author_sort Polka, Erin
collection PubMed
description 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.
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spelling pubmed-82011262021-06-15 MCR: Open-Source Software to Automate Compilation of Health Study Report-Back Polka, Erin Childs, Ellen Friedman, Alexa Tomsho, Kathryn S. Claus Henn, Birgit Scammell, Madeleine K. Milando, Chad W. Int J Environ Res Public Health Article 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. MDPI 2021-06-05 /pmc/articles/PMC8201126/ /pubmed/34198866 http://dx.doi.org/10.3390/ijerph18116104 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Polka, Erin
Childs, Ellen
Friedman, Alexa
Tomsho, Kathryn S.
Claus Henn, Birgit
Scammell, Madeleine K.
Milando, Chad W.
MCR: Open-Source Software to Automate Compilation of Health Study Report-Back
title MCR: Open-Source Software to Automate Compilation of Health Study Report-Back
title_full MCR: Open-Source Software to Automate Compilation of Health Study Report-Back
title_fullStr MCR: Open-Source Software to Automate Compilation of Health Study Report-Back
title_full_unstemmed MCR: Open-Source Software to Automate Compilation of Health Study Report-Back
title_short MCR: Open-Source Software to Automate Compilation of Health Study Report-Back
title_sort mcr: open-source software to automate compilation of health study report-back
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8201126/
https://www.ncbi.nlm.nih.gov/pubmed/34198866
http://dx.doi.org/10.3390/ijerph18116104
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