Project GIVE: Using a Virtual Genetics Service Platform To Reduce Health Inequities and Improve Access to Genomic Care in an Underserved Region of Texas

Authors

Blake Vuocolo
Roberta Sierra
Daniel Brooks
Christopher Holder
Lauren Urbanski
Keila Rodriguez
Jose David Gamez
Surya Narayan Mulukutla
Ana Hernandez
Alberto Allegre
Humberto Hidalgo
Sarah Rodriguez
Sandy Magallan
Jeremy Gibson
Juan Carlos Bernini
Melanie Watson
Robert Nelson
Lizbeth Mellin-Sanchez
Nancy Garcia
Lori Berry
Hongzheng Dai
Claudia Soler-Alfonso
Kent Carter
Brendan Lee
Seema R Lalani

Publication Date

9-9-2024

Journal

Journal of Neurodevelopmental Disorders

DOI

10.1186/s11689-024-09560-x

PMID

39251895

PMCID

PMC11382520

PubMedCentral® Posted Date

9-9-2024

PubMedCentral® Full Text Version

Post-print

Published Open-Access

yes

Keywords

Adolescent, Child, Female, Humans, Male, Electronic Health Records, Genetic Services, Genomics, Health Inequities, Health Services Accessibility, Healthcare Disparities, Medically Underserved Area, Telemedicine, Texas, Virtual access to genomics, Consultagene, Genome sequencing, Medically underserved population

Abstract

BACKGROUND: The utilization of genomic information to improve health outcomes is progressively becoming more common in clinical practice. Nonetheless, disparities persist in accessing genetic services among ethnic minorities, individuals with low socioeconomic status, and other vulnerable populations. The Rio Grande Valley (RGV) at the Texas-Mexico border is predominantly Hispanic/Latino with a high poverty rate and very limited access to genetic services. Funded by the National Center for Advancing Translational Sciences, Project GIVE (Genetic Inclusion by Virtual Evaluation) was launched in 2022 to reduce the time to diagnosis and increase provider knowledge of genomics in this region, with the goal of improving pediatric health outcomes. We describe our experience of establishing a virtual pediatric genomic service in this region to expeditiously identify, recruit, and evaluate pediatric patients with undiagnosed diseases.

METHODS: We have utilized an innovative electronic health record (EHR) agnostic virtual telehealth and educational platform called Consultagene to receive referrals from healthcare providers in the RGV. Using this portal, genetic services, including virtual evaluation and genome sequencing (GS), are being delivered to children with rare diseases. The study has also integrated effective methods to involve and educate community providers through in-person meetings and Continuing Professional Education (CPE) events.

RESULTS: The recruitment efforts have proven highly successful with the utilization of Consultagene in this medically underserved region. The project's ongoing engagement efforts with local healthcare providers have resulted in progressively more referrals to the study over time, thus improving inclusion and access to genomic care in the RGV. Additionally, the curated CPE content has been well received by healthcare providers in the region.

CONCLUSIONS: Project GIVE study has allowed advanced genetic evaluation and delivery of GS through the virtual Consultagene portal, effectively circumventing the recognized socioeconomic and logistical barriers to accessing genetic services within this border community.

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