• NIH Aug 1, 2019 | R21

    Understanding All of Us Enrollees and Decliners ™ Motivations to Enhance Recruitment and Retention: FQHC's barriers to caring for patients with clinically actionable genetic research results

    Principal Investigator(s): CRANE, JOHANNA , NEUHAUS, CAROLYN PLUNKETT (contact);

    Institution: HASTINGS CENTER, INC.

    FOA Number: PA-18-591

    Abstract

    PROJECT NARRATIVE Our overall objective is to make progress toward mitigating the challenges that un/underinsured participants in the All of Us Research Program may face when they access care for medically actionable genetic research results. Un/underinsured patients are typically left of out advances in genomics because they cannot afford to follow-up on research findings in the clinical setting, and face myriad barriers to accessing specialized care for lifelong disorders (e.g. barriers with regard to transportation, childcare, obtaining time off from work, and following specialized diets). Our long-term goal is the reduction in racial, ethnic, and class health disparities by ensuring that all people, including those that are un/underinsured, benefit from advances in genomics.

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    R21

    Project Number:
    R21HG010531

    Start Date:
    Aug 1, 2019

    End Date:
    Jul 31, 2021

    PROJECT TERMS:

    African American, All of Us Research Program, Anxiety, barrier to care, care systems, Caring, Clinical, clinically actionable, Community Health, Complex, design, Development, Diet, Disease, Enrollment, Ensure, ethical legal social implication, ethnographic method, Face, Family, Federally Qualified Health Center, Focus Groups, follow-up, Genetic, genetic information, Genetic Predisposition to Disease, Genetic Research, Genomics, Goals, health disparity, Health Services Accessibility, Impairment, Individual, informant, institutional capacity, Interview, Knowledge, Latino, Leadership, Left, Maps, Medical, medical specialties, Motivation, Neighborhood Health Center, New York, novel strategies, Outcome, parent grant, Participant, Patient Care, patient population, Patient Recruitments, Patients, Policies, Population, Poverty, programs, racial and ethnic, recruit, Research, Research Project Grants, research study, Review Literature, Risk, Services, Site, study population, System, Testing, Thick, Time, Transportation, Underinsured, Underrepresented Groups, United States, willingness, Work

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