Developing a Process for Returning Medically Actionable Genomic Variants to Latino Patients in a Federally Qualified Health Center

Gabriel Q. Shaibi, Iftikhar Jan Kullo, Davinder P. Singh, Richard R Sharp, Elena Anna De Filippis, Idali Cuellar, Valentina Hernandez, Sharon Levey, Carmen Radecki Breitkopf, Janet E Olson, James R Cerhan, Lawrence J. Mandarino, Stephen N Thibodeau, Noralane Morey Lindor

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
JournalPublic Health Genomics
DOIs
StateAccepted/In press - Jan 1 2018

Fingerprint

Hyperlipidemias
Hispanic Americans
Community Health Planning
Clinical Decision Support Systems
Community Health Centers
Aftercare
Precision Medicine
Electronic Health Records
Health
Polyps
Primary Health Care
Patient Care
Colon
Research Personnel
Phenotype
Education

Keywords

  • Federally Qualified Health Center
  • Health disparities
  • Hispanic peoples
  • Latino community
  • Precision medicine
  • Return of results

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

Cite this

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title = "Developing a Process for Returning Medically Actionable Genomic Variants to Latino Patients in a Federally Qualified Health Center",
abstract = "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.",
keywords = "Federally Qualified Health Center, Health disparities, Hispanic peoples, Latino community, Precision medicine, Return of results",
author = "Shaibi, {Gabriel Q.} and Kullo, {Iftikhar Jan} and Singh, {Davinder P.} and Sharp, {Richard R} and {De Filippis}, {Elena Anna} and Idali Cuellar and Valentina Hernandez and Sharon Levey and {Radecki Breitkopf}, Carmen and Olson, {Janet E} and Cerhan, {James R} and Mandarino, {Lawrence J.} and Thibodeau, {Stephen N} and Lindor, {Noralane Morey}",
year = "2018",
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AU - Shaibi, Gabriel Q.

AU - Kullo, Iftikhar Jan

AU - Singh, Davinder P.

AU - Sharp, Richard R

AU - De Filippis, Elena Anna

AU - Cuellar, Idali

AU - Hernandez, Valentina

AU - Levey, Sharon

AU - Radecki Breitkopf, Carmen

AU - Olson, Janet E

AU - Cerhan, James R

AU - Mandarino, Lawrence J.

AU - Thibodeau, Stephen N

AU - Lindor, Noralane Morey

PY - 2018/1/1

Y1 - 2018/1/1

N2 - 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.

AB - 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.

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