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Developing a Process for Returning Medically Actionable Genomic Variants to Latino Patients in a Federally Qualified Health Center
Public Health Genomics ( IF 1.7 ) Pub Date : 2018-01-01 , DOI: 10.1159/000494488
Gabriel Q Shaibi 1 , Iftikhar J Kullo 2 , Davinder P Singh 3 , Richard R Sharp 4 , Eleanna De Filippis 5 , Idali Cuellar 4 , Valentina Hernandez 3 , Sharon Levey 4 , Carmen Radecki Breitkopf 4 , Janet E Olson 4 , James R Cerhan 4 , Lawrence J Mandarino 6 , Stephen N Thibodeau 7 , Noralane M Lindor 4
Affiliation  

Aim: To develop a process for returning medically actionable genomic variants to Latino patients receiving care in a Federally Qualified Health Center. Methods: Prior to recruitment, researchers met with primary care providers to (1) orient clinicians to the project, (2) establish a process for returning actionable and nonactionable results to participants and providers through the electronic health record, and (3) develop a process for offering clinical decision support for follow-up education and care. A Community Advisory Board was engaged to provide input on recruitment strategies and materials for conveying results to participants. Participants in the Sangre Por Salud (Blood for Health) Biobank with hyperlipidemia or colon polyps represented the pool of potentially eligible participants. Results: A total of 1,621 individuals were invited to participate and 710 agreed to an in- person consenting visit (194 no-showed and 16 declined). Over 12-months, 500 participants were enrolled. Participants were primarily Spanish-speaking (81.6%), female (74.2%), and enrolled because of hyperlipidemia (95.4%). All but 2 participants opted to receive primary (i.e., related to enrollment phenotypes) as well as secondary actionable results. Conclusion: Efforts to bring precision medicine to community-based health centers serving minority patients may require multilevel engagement activities to include individuals, providers, health systems, and the community.

中文翻译:

在联邦合格的卫生中心开发一种将医学上可行的基因组变体返回给拉丁裔患者的过程

目标:开发一个流程,将医学上可行的基因组变异返回给在联邦合格健康中心接受护理的拉丁裔患者。方法:在招募之前,研究人员与初级保健提供者会面,以 (1) 为临床医生定位该项目,(2) 建立一个流程,通过电子健康记录向参与者和提供者返回可操作和不可操作的结果,以及 (3) 制定一个流程为后续教育和护理提供临床决策支持的过程。社区咨询委员会参与了就招聘策略和材料向参与者传达结果提供意见。患有高脂血症或结肠息肉的 Sangre Por Salud(血液为健康)生物库的参与者代表了潜在符合条件的参与者群体。结果:共1个,621 人被邀请参加,710 人同意亲自同意访问(194 人未出现,16 人拒绝)。在 12 个月的时间里,共招募了 500 名参与者。参与者主要是讲西班牙语的 (81.6%)、女性 (74.2%),并因高脂血症 (95.4%) 入组。除了 2 名参与者之外,所有参与者都选择接受主要的(即与注册表型相关的)以及次要的可操作结果。结论:将精准医疗引入为少数族裔患者服务的社区卫生中心的努力可能需要多层次的参与活动,包括个人、提供者、卫生系统和社区。并因高脂血症而入组 (95.4%)。除了 2 名参与者之外,所有参与者都选择接受主要的(即与注册表型相关的)以及次要的可操作结果。结论:将精准医疗引入为少数族裔患者服务的社区卫生中心的努力可能需要多层次的参与活动,包括个人、提供者、卫生系统和社区。并因高脂血症而入组 (95.4%)。除了 2 名参与者之外,所有参与者都选择接受主要的(即与注册表型相关的)以及次要的可操作结果。结论:将精准医疗引入为少数族裔患者服务的社区卫生中心的努力可能需要多层次的参与活动,包括个人、提供者、卫生系统和社区。
更新日期:2018-01-01
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