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Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research

The purpose of this study is to characterize the potential benefits and challenges of electronic informed consent (eIC) as a strategy for rapidly expanding the reach of large biobanks while reducing costs and potentially enhancing participant engagement. The Partners HealthCare Biobank (Partners Bio...

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Autores principales: Boutin, Natalie T., Mathieu, Kathleen, Hoffnagle, Alison G., Allen, Nicole L., Castro, Victor M., Morash, Megan, O’Rourke, P. Pearl, Hohmann, Elizabeth L., Herring, Neil, Bry, Lynn, Slaugenhaupt, Susan A., Karlson, Elizabeth W., Weiss, Scott T., Smoller, Jordan W.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4932464/
https://www.ncbi.nlm.nih.gov/pubmed/27294961
http://dx.doi.org/10.3390/jpm6020017
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author Boutin, Natalie T.
Mathieu, Kathleen
Hoffnagle, Alison G.
Allen, Nicole L.
Castro, Victor M.
Morash, Megan
O’Rourke, P. Pearl
Hohmann, Elizabeth L.
Herring, Neil
Bry, Lynn
Slaugenhaupt, Susan A.
Karlson, Elizabeth W.
Weiss, Scott T.
Smoller, Jordan W.
author_facet Boutin, Natalie T.
Mathieu, Kathleen
Hoffnagle, Alison G.
Allen, Nicole L.
Castro, Victor M.
Morash, Megan
O’Rourke, P. Pearl
Hohmann, Elizabeth L.
Herring, Neil
Bry, Lynn
Slaugenhaupt, Susan A.
Karlson, Elizabeth W.
Weiss, Scott T.
Smoller, Jordan W.
author_sort Boutin, Natalie T.
collection PubMed
description The purpose of this study is to characterize the potential benefits and challenges of electronic informed consent (eIC) as a strategy for rapidly expanding the reach of large biobanks while reducing costs and potentially enhancing participant engagement. The Partners HealthCare Biobank (Partners Biobank) implemented eIC tools and processes to complement traditional recruitment strategies in June 2014. Since then, the Partners Biobank has rigorously collected and tracked a variety of metrics relating to this novel recruitment method. From June 2014 through January 2016, the Partners Biobank sent email invitations to 184,387 patients at Massachusetts General Hospital and Brigham and Women’s Hospital. During the same time period, 7078 patients provided their consent via eIC. The rate of consent of emailed patients was 3.5%, and the rate of consent of patients who log into the eIC website at Partners Biobank was 30%. Banking of biospecimens linked to electronic health records has become a critical element of genomic research and a foundation for the NIH’s Precision Medicine Initiative (PMI). eIC is a feasible and potentially game-changing strategy for these large research studies that depend on patient recruitment.
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spelling pubmed-49324642016-07-13 Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research Boutin, Natalie T. Mathieu, Kathleen Hoffnagle, Alison G. Allen, Nicole L. Castro, Victor M. Morash, Megan O’Rourke, P. Pearl Hohmann, Elizabeth L. Herring, Neil Bry, Lynn Slaugenhaupt, Susan A. Karlson, Elizabeth W. Weiss, Scott T. Smoller, Jordan W. J Pers Med Article The purpose of this study is to characterize the potential benefits and challenges of electronic informed consent (eIC) as a strategy for rapidly expanding the reach of large biobanks while reducing costs and potentially enhancing participant engagement. The Partners HealthCare Biobank (Partners Biobank) implemented eIC tools and processes to complement traditional recruitment strategies in June 2014. Since then, the Partners Biobank has rigorously collected and tracked a variety of metrics relating to this novel recruitment method. From June 2014 through January 2016, the Partners Biobank sent email invitations to 184,387 patients at Massachusetts General Hospital and Brigham and Women’s Hospital. During the same time period, 7078 patients provided their consent via eIC. The rate of consent of emailed patients was 3.5%, and the rate of consent of patients who log into the eIC website at Partners Biobank was 30%. Banking of biospecimens linked to electronic health records has become a critical element of genomic research and a foundation for the NIH’s Precision Medicine Initiative (PMI). eIC is a feasible and potentially game-changing strategy for these large research studies that depend on patient recruitment. MDPI 2016-06-09 /pmc/articles/PMC4932464/ /pubmed/27294961 http://dx.doi.org/10.3390/jpm6020017 Text en © 2016 by the authors; 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 (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Boutin, Natalie T.
Mathieu, Kathleen
Hoffnagle, Alison G.
Allen, Nicole L.
Castro, Victor M.
Morash, Megan
O’Rourke, P. Pearl
Hohmann, Elizabeth L.
Herring, Neil
Bry, Lynn
Slaugenhaupt, Susan A.
Karlson, Elizabeth W.
Weiss, Scott T.
Smoller, Jordan W.
Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research
title Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research
title_full Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research
title_fullStr Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research
title_full_unstemmed Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research
title_short Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research
title_sort implementation of electronic consent at a biobank: an opportunity for precision medicine research
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4932464/
https://www.ncbi.nlm.nih.gov/pubmed/27294961
http://dx.doi.org/10.3390/jpm6020017
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