Integration of stakeholder engagement from development to dissemination in genomic medicine research: Approaches and outcomes from the CSER Consortium |
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| Authors: | Julianne M O’Daniel Sara Ackerman Lauren R Desrosiers Shannon Rego Sara J Knight Lonna Mollison Grace Byfield Katherine P Anderson Maria I Danila Carol R Horowitz Galen Joseph Grace Lamoure Nangel M Lindberg Carmit K McMullen Kathleen F Mittendorf Michelle A Ramos Mimsie Robinson Catherine Sillari Ebony B Madden |
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| Institution: | 1. Department of Genetics, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC;2. Department of Social & Behavioral Sciences, School of Nursing, University of California San Francisco, San Francisco, CA;3. Department of Pediatrics, Baylor College of Medicine, Texas Children''s Cancer Center, Texas Children''s Hospital, Houston, TX;4. Institute for Human Genetics, University of California San Francisco, San Francisco, CA;5. Division of Epidemiology, Department of Internal Medicine, University of Utah School of Medicine, Salt Lake City, UT;6. Denver Health Ambulatory Care Services, Denver, CO;7. Division of Clinical Immunology and Rheumatology, Department of Medicine, Heersink School of Medicine, The University of Alabama at Birmingham, Birmingham, AL;8. Institute for Health Equity Research, Icahn School of Medicine at Mount Sinai, New York, NY;9. Department of Humanities and Social Sciences, University of California San Francisco, San Francisco, CA;10. National Human Genome Research Institute, National Institutes of Health, Bethesda, MD;11. Center for Health Research Kaiser Permanente Northwest, Portland, OR;12. Vanderbilt Ingram Cancer Center, Vanderbilt University Medical Center, Nashville, TN;13. Bethel Gospel Assembly, New York, NY |
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| Abstract: | PurposeThere is a critical need for genomic medicine research that reflects and benefits socioeconomically and ancestrally diverse populations. However, disparities in research populations persist, highlighting that traditional study designs and materials may be insufficient or inaccessible to all groups. New approaches can be gained through collaborations with patient/community stakeholders. Although some benefits of stakeholder engagement are recognized, routine incorporation into the design and implementation of genomics research has yet to be realized.MethodsThe National Institutes of Health–funded Clinical Sequencing Evidence-Generating Research (CSER) consortium required stakeholder engagement as a dedicated project component. Each CSER project planned and carried out stakeholder engagement activities with differing goals and expected outcomes. Examples were curated from each project to highlight engagement strategies and outcomes throughout the research lifecycle from development through dissemination.ResultsProjects tailored strategies to individual study needs, logistical constraints, and other challenges. Lessons learned include starting early with engagement efforts across project stakeholder groups and planned flexibility to enable adaptations throughout the project lifecycle.ConclusionEach CSER project used more than 1 approach to engage with relevant stakeholders, resulting in numerous adaptations and tremendous value added throughout the full research lifecycle. Incorporation of community stakeholder insight improves the outcomes and relevance of genomic medicine research. |
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| Keywords: | Clinical research Genetic medicine Genomics Stakeholders Stakeholder engagement |
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