Practical considerations for implementing genomic information resources

Author:

Overby Casey,Connolly John,Chute Christopher,Denny Joshua,Freimuth Robert,Hartzler Andrea,Holm Ingrid,Manzi Shannon,Pathak Jyotishman,Peissig Peggy,Smith Maureen,Williams Marc,Shirts Brian,Stoffel Elena,Tarczy-Hornoch Peter,Vitek Carolyn R.,Wolf Wendy,Starren Justin,Rasmussen Luke

Abstract

SummaryTo understand opinions and perceptions on the state of information resources specifically targeted to genomics, and approaches to delivery in clinical practice.We conducted a survey of genomic content use and its clinical delivery from representatives across eight institutions in the electronic Medical Records and Genomics (eMERGE) network and two institutions in the Clinical Sequencing Exploratory Research (CSER) consortium in 2014.Eleven responses representing distinct projects across ten sites showed heterogeneity in how content is being delivered, with provider-facing content primarily delivered via the electronic health record (EHR) (n=10), and paper/pamphlets as the leading mode for patient-facing content (n=9). There was general agreement (91%) that new content is needed for patients and providers specific to genomics, and that while aspects of this content could be shared across institutions there remain site-specific needs (73% in agreement).This work identifies a need for the improved access to and expansion of information resources to support genomic medicine, and opportunities for content developers and EHR vendors to partner with institutions to develop needed resources, and streamline their use – such as a central content site in multiple modalities while implementing approaches to allow for site-specific customization. Citation: Rasmussen LV, Overby CL, Connolly J, Chute CG, Denny JC, Freimuth RR, Hartzler AL, Holm IA, Manzi S, Pathak J, Peissig PL, Smith M, Williams MS, Shirts BH, Stoffel EM, Tarczy-Hornoch P, Rohrer Vitek CR, Wolf WA, Starren J. Practical considerations for implementing genomic information resources – experiences from eMERGE and CSER.

Funder

Cincinnati Children’s Hospital Medical Center/Boston Children’s Hospital

Children’s Hospital of Philadelphia

Essentia Institute of Rural Health, Marshfield Clinic Research Foundation and Pennsylvania State University

Geisinger Clinic

Group Health Cooperative/University of Washington

Mayo Clinic

Icahn School of Medicine at Mount Sinai

Northwestern University

Vanderbilt University Medical Center

Vanderbilt University Medical Center serving as the Coordinating Center

Publisher

Georg Thieme Verlag KG

Subject

Health Information Management,Computer Science Applications,Health Informatics

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