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Grant Details

Grant Number: 4U01HG007282-04 Interpret this number
Primary Investigator: Ginsburg, Geoffrey
Organization: Duke University
Project Title: Implementation, Adoption, and Utility of Family History in Diverse Care Settings
Fiscal Year: 2016


DESCRIPTION (provided by applicant): The outcome of this research will be a demonstration that family health history (FHH) risk data can be used efficiently to deliver more effective healthcare in geographically and ethnically diverse clinical care environments. Although FHH is a standard component of the medical interview its widespread adoption is hindered by three major barriers: (1) a dearth of standard collection methods; (2) the absence of health care provider access to complete FHH information; and (3) the need for clinical guidance for the interpretation and use of FHH. In addition, the time constraints of the busy provider and poor integration of FHH with paper medical records or electronic medical records (EMR) impede its widespread use. We hypothesize that patient- driven and electronic collection of FHH for risk stratification will promote more informed decision-making by patients and providers, and improves adherence to risk-stratified preventive care guidelines. We will use an implementation sciences approach to integrate an innovative FHH system that collects FHH from patients. Intermountain Healthcare will provide the information technology expertise with EMR design to develop an innovative solution to a storage model standard for FHH data as well as a centralized standards-compliant open clinical decision support (OpenCDS) rule development architecture to analyze FHH and to generate evidence-based, individualized, disease risk, preventive care recommendations for both patients and providers. Five health care delivery organizations will participate in this demonstration project: Duke University, the Medical College of Wisconsin, the Air Force, Essential Health, and the Marshfield Clinic. The study will take place in 'real world' clinical, socio-cultural, and demographically diverse (rural, underserved, academic, family medicine) care clinics (n=34) in 6 states (CA, ID, MN, NC, ND, WI) that include genomic medicine 'early adopter' and 'nave' sites, as well as those that are EMR-enabled and others that are not. Using a cluster randomized controlled pragmatic hybrid type III implementation-effectiveness observational study design, we hypothesize we can demonstrate uptake of the Genomic Medicine Model and its clinical and personal utility. We will recruit a minimum of 7000 English or Spanish speaking adults over a 3-year period and we will capture process metrics and outcomes that are measured in the course of usual care. Our goals are: 1)To optimize the collection of patient entered FHH in diverse clinical environments for coronary heart disease, thrombosis, and selected cancers, 2) to export FHH data to an OpenCDS platform and return CDS results to providers and patients (and to EMRs where relevant) and to explore the integration of genetic risk and FHH data at selected sites, 3) to assess the clinical and personal utility of FHH using a pragmatic observational study design to assess reach, adoption, integrity, exposure, and sustainability, and to capture, analyze, and report effectiveness outcomes at each stakeholder level: patient, provider, and clinic/system, and 4) to take a leadership role in the dissemination of guidelines for FHH intervention across in diverse practice settings.


Strategies to Integrate Genomic Medicine into Clinical Care: Evidence from the IGNITE Network.
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Source: Journal of personalized medicine, 2021-07-08; 11(7), .
EPub date: 2021-07-08.
PMID: 34357114
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At the intersection of precision medicine and population health: an implementation-effectiveness study of family health history based systematic risk assessment in primary care.
Authors: Orlando L.A. , Wu R.R. , Myers R.A. , Neuner J. , McCarty C. , Haller I.V. , Harry M. , Fulda K.G. , Dimmock D. , Rakhra-Burris T. , et al. .
Source: BMC health services research, 2020-11-07; 20(1), p. 1015.
EPub date: 2020-11-07.
PMID: 33160339
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Results and Lessons of a Pilot Study of Cascade Screening for Familial Hypercholesterolemia in US Primary Care Practices.
Authors: Neuner J. , Dimmock D. , Kirschner A.P. , Beaudry H. , Paradowski J. , Orlando L. .
Source: Journal of general internal medicine, 2020 01; 35(1), p. 351-353.
PMID: 31667742
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Affiliate network members as force amplifiers of genomic medicine research.
Authors: Ginsburg G.S. , Madden E. , Empey P.E. .
Source: Personalized medicine, 2019 11; 16(6), p. 431-433.
EPub date: 2019-11-11.
PMID: 31709897
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Family health history: underused for actionable risk assessment.
Authors: Ginsburg G.S. , Wu R.R. , Orlando L.A. .
Source: Lancet (London, England), 2019-08-17; 394(10198), p. 596-603.
EPub date: 2019-08-05.
PMID: 31395442
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What will it take to implement genomics in practice? Lessons from the IGNITE Network.
Authors: Ginsburg G.S. , Horowitz C.R. , Orlando L.A. .
Source: Personalized medicine, 2019 07; 16(4), p. 259-261.
EPub date: 2019-07-23.
PMID: 31331251
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Authors: Zebrowski A.M. , Ellis D.E. , Barg F.K. , Sperber N.R. , Bernhardt B.A. , Denny J.C. , Dexter P.R. , Ginsburg G.S. , Horowitz C.R. , Johnson J.A. , et al. .
Source: Genetics in medicine : official journal of the American College of Medical Genetics, 2019 07; 21(7), p. 1534-1540.
EPub date: 2018-11-23.
PMID: 30467402
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IGNITE network: Response of patients to genomic medicine interventions.
Authors: Orlando L.A. , Voils C. , Horowitz C.R. , Myers R.A. , Arwood M.J. , Cicali E.J. , McDonough C.W. , Pollin T.I. , Guan Y. , Levy K.D. , et al. .
Source: Molecular genetics & genomic medicine, 2019 05; 7(5), p. e636.
EPub date: 2019-03-20.
PMID: 30895746
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Effect of Sociodemographic Factors on Uptake of a Patient-Facing Information Technology Family Health History Risk Assessment Platform.
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Source: Applied clinical informatics, 2019 03; 10(2), p. 180-188.
EPub date: 2019-03-13.
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Opportunities to implement a sustainable genomic medicine program: lessons learned from the IGNITE Network.
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Source: Genetics in medicine : official journal of the American College of Medical Genetics, 2019 03; 21(3), p. 743-747.
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Implementation, adoption, and utility of family health history risk assessment in diverse care settings: evaluating implementation processes and impact with an implementation framework.
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Source: Genetics in medicine : official journal of the American College of Medical Genetics, 2019 02; 21(2), p. 331-338.
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Developing a common framework for evaluating the implementation of genomic medicine interventions in clinical care: the IGNITE Network's Common Measures Working Group.
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Challenges and strategies for implementing genomic services in diverse settings: experiences from the Implementing GeNomics In pracTicE (IGNITE) network.
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Source: BMC medical genomics, 2017-05-22; 10(1), p. 35.
EPub date: 2017-05-22.
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The IGNITE network: a model for genomic medicine implementation and research.
Authors: Weitzel K.W. , Alexander M. , Bernhardt B.A. , Calman N. , Carey D.J. , Cavallari L.H. , Field J.R. , Hauser D. , Junkins H.A. , Levin P.A. , et al. .
Source: BMC medical genomics, 2016-01-05; 9, p. 1.
EPub date: 2016-01-05.
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Authors: Wu R.R. , Myers R.A. , McCarty C.A. , Dimmock D. , Farrell M. , Cross D. , Chinevere T.D. , Ginsburg G.S. , Orlando L.A. , Family Health History Network .
Source: Implementation science : IS, 2015-11-24; 10, p. 163.
EPub date: 2015-11-24.
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