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 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.
Partners HealthCare Biobank, Partners HealthCare Personalized Medicine, Boston, MA 02139, USA. nboutin@partners.org.
Natalie T
NT
Boutin
Massachusetts General Hospital, Boston, MA 02114, USA. kmathieu@mgh.harvard.edu.
Kathleen
K
Mathieu
Partners HealthCare Biobank, Partners HealthCare Personalized Medicine, Boston, MA 02139, USA. ahoffnagle@mgh.harvard.edu.|Massachusetts General Hospital, Boston, MA 02114, USA. ahoffnagle@mgh.harvard.edu.
Alison G
AG
Hoffnagle
Partners HealthCare Biobank, Partners HealthCare Personalized Medicine, Boston, MA 02139, USA. nmallen@partners.org.|Massachusetts General Hospital, Boston, MA 02114, USA. nmallen@partners.org.
Nicole L
NL
Allen
Partners Research Information Systems and Computing, Partners HealthCare Systems, Boston, MA 02115, USA. vcastro@partners.org.
Victor M
VM
Castro
Human Research Affairs, Partners HealthCare, Boston, MA 02116, USA. mmorash@partners.org.
Megan
M
Morash
Human Research Affairs, Partners HealthCare, Boston, MA 02116, USA. porourke@partners.org.
P Pearl
PP
O'Rourke
Massachusetts General Hospital, Boston, MA 02114, USA. ehohmann@mgh.harvard.edu.|Human Research Affairs, Partners HealthCare, Boston, MA 02116, USA. ehohmann@mgh.harvard.edu.
Elizabeth L
EL
Hohmann
Department of Pathology, Brigham and Women's Hospital, Boston, MA 02115, USA. nherring@partners.org.
Neil
N
Herring
Department of Pathology, Brigham and Women's Hospital, Boston, MA 02115, USA. lbry@partners.org.
Lynn
L
Bry
Massachusetts General Hospital, Boston, MA 02114, USA. sslaugenhaupt@mgh.harvard.edu.|Department of Neurology and the Center for Human Genetic Research, Boston, MA 02114, USA. sslaugenhaupt@mgh.harvard.edu.
Susan A
SA
Slaugenhaupt
Channing Division of Network Medicine, Brigham and Women's Hospital, Boston, MA 02115, USA. ekarlson@partners.org.
Elizabeth W
EW
Karlson
Partners HealthCare Biobank, Partners HealthCare Personalized Medicine, Boston, MA 02139, USA. sweiss@partners.org.|Channing Division of Network Medicine, Brigham and Women's Hospital, Boston, MA 02115, USA. sweiss@partners.org.
Scott T
ST
Weiss
Massachusetts General Hospital, Boston, MA 02114, USA. jsmoller@hms.harvard.edu.|Psychiatric and Neurodevelopmental Genetics Unit, Center for Human Genetic Research, Boston, MA 02114, USA. jsmoller@hms.harvard.edu.
Jordan W
JW
Smoller
biobank; electronic consent; informed consent; precision medicine