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...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2016-06-01
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| Series: | Journal of Personalized Medicine |
| Subjects: | |
| Online Access: | http://www.mdpi.com/2075-4426/6/2/17 |
| _version_ | 1797760737874018304 |
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| author | Natalie T. Boutin Kathleen Mathieu Alison G. Hoffnagle Nicole L. Allen Victor M. Castro Megan Morash P. Pearl O’Rourke Elizabeth L. Hohmann Neil Herring Lynn Bry Susan A. Slaugenhaupt Elizabeth W. Karlson Scott T. Weiss Jordan W. Smoller |
| author_facet | Natalie T. Boutin Kathleen Mathieu Alison G. Hoffnagle Nicole L. Allen Victor M. Castro Megan Morash P. Pearl O’Rourke Elizabeth L. Hohmann Neil Herring Lynn Bry Susan A. Slaugenhaupt Elizabeth W. Karlson Scott T. Weiss Jordan W. Smoller |
| author_sort | Natalie T. Boutin |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-03-12T19:02:57Z |
| format | Article |
| id | doaj.art-131d375cfe834f4397004a0570297cc2 |
| institution | Directory Open Access Journal |
| issn | 2075-4426 |
| language | English |
| last_indexed | 2024-03-12T19:02:57Z |
| publishDate | 2016-06-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Personalized Medicine |
| spelling | doaj.art-131d375cfe834f4397004a0570297cc22023-08-02T06:28:09ZengMDPI AGJournal of Personalized Medicine2075-44262016-06-01621710.3390/jpm6020017jpm6020017Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine ResearchNatalie T. Boutin0Kathleen Mathieu1Alison G. Hoffnagle2Nicole L. Allen3Victor M. Castro4Megan Morash5P. Pearl O’Rourke6Elizabeth L. Hohmann7Neil Herring8Lynn Bry9Susan A. Slaugenhaupt10Elizabeth W. Karlson11Scott T. Weiss12Jordan W. Smoller13Partners HealthCare Biobank, Partners HealthCare Personalized Medicine, Boston, MA 02139, USAMassachusetts General Hospital, Boston, MA 02114, USAPartners HealthCare Biobank, Partners HealthCare Personalized Medicine, Boston, MA 02139, USAPartners HealthCare Biobank, Partners HealthCare Personalized Medicine, Boston, MA 02139, USAPartners Research Information Systems and Computing, Partners HealthCare Systems, Boston, MA 02115, USAHuman Research Affairs, Partners HealthCare, Boston, MA 02116, USAHuman Research Affairs, Partners HealthCare, Boston, MA 02116, USAMassachusetts General Hospital, Boston, MA 02114, USADepartment of Pathology, Brigham and Women’s Hospital, Boston, MA 02115, USADepartment of Pathology, Brigham and Women’s Hospital, Boston, MA 02115, USAMassachusetts General Hospital, Boston, MA 02114, USAChanning Division of Network Medicine, Brigham and Women’s Hospital, Boston, MA 02115, USAPartners HealthCare Biobank, Partners HealthCare Personalized Medicine, Boston, MA 02139, USAMassachusetts General Hospital, Boston, MA 02114, USAThe 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.http://www.mdpi.com/2075-4426/6/2/17biobankelectronic consentprecision medicineinformed consent |
| spellingShingle | Natalie T. Boutin Kathleen Mathieu Alison G. Hoffnagle Nicole L. Allen Victor M. Castro Megan Morash P. Pearl O’Rourke Elizabeth L. Hohmann Neil Herring Lynn Bry Susan A. Slaugenhaupt Elizabeth W. Karlson Scott T. Weiss Jordan W. Smoller Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research Journal of Personalized Medicine biobank electronic consent precision medicine informed consent |
| 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 | biobank electronic consent precision medicine informed consent |
| url | http://www.mdpi.com/2075-4426/6/2/17 |
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