Dataset Information

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.

SUBMITTER: Shaibi GQ

PROVIDER: S-EPMC6363857 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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

Shaibi Gabriel Q GQ Kullo Iftikhar J IJ Singh Davinder P DP Sharp Richard R RR De Filippis Eleanna E Cuellar Idali I Hernandez Valentina V Levey Sharon S Radecki Breitkopf Carmen C Olson Janet E JE Cerhan James R JR Mandarino Lawrence J LJ Thibodeau Stephen N SN Lindor Noralane M NM

Public health genomics 20181206 1-2

<h4>Aim</h4>To develop a process for returning medically actionable genomic variants to Latino patients receiving care in a Federally Qualified Health Center.<h4>Methods</h4>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- ...[more]

PMID: 30522109

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Project description:BACKGROUND:Medically complex urban patients experiencing homelessness comprise a disproportionate number of high-cost, high-need patients. There are few studies of interventions to improve care for these populations; their social complexity makes them difficult to study and requires clinical and research collaboration. We present a protocol for a trial of the streamlined unified meaningfully managed interdisciplinary team (SUMMIT) team, an ambulatory ICU (A-ICU) intervention to improve utilization and patient experience that uses control populations to address limitations of prior research. METHODS/DESIGN:Participants are patients at a Federally Qualified Health Center in Portland, Oregon that serves patients experiencing homelessness or who have substance use disorders. Participants meet at least one of the following criteria: >?1 hospitalization over past 6 months; at least one medical co-morbidity including uncontrolled diabetes, heart failure, chronic obstructive pulmonary disease, liver disease, soft-tissue infection; and 1 mental health diagnosis or substance use disorder. We exclude patients if they have <?6 months to live, have cognitive impairment preventing consent, or are non-English speaking. Following consent and baseline assessment, we randomize participants to immediate SUMMIT intervention or wait-list control group. Participants receiving the SUMMIT intervention transfer care to a clinic-based team of physician, complex care nurse, care coordinator, social worker, and pharmacist with reduced panel size and flexible scheduling with emphasis on motivational interviewing, patient goal setting and advanced care planning. Wait-listed participants continue usual care plus engagement with community health worker intervention for 6 months prior to joining SUMMIT. The primary outcome is hospital utilization at 6 months; secondary outcomes include emergency department utilization, patient activation, and patient experience measures. We follow participants for 12 months after intervention initiation. DISCUSSION:The SUMMIT A-ICU is an intensive primary care intervention for high-utilizers impacted by homelessness. Use of a wait-list control design balances community and staff stakeholder needs, who felt all participants should have access to the intervention, while addressing research needs to include control populations. Design limitations include prolonged follow-up period that increases risk for attrition, and conflict between practice and research; including partner stakeholders and embedded researchers familiar with the population in study planning can mitigate these barriers. Trial registration ClinicalTrials.gov NCT03224858, Registered 7/21/17 retrospectively registered https://clinicaltrials.gov/ct2/show/NCT03224858.

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Dataset Information

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

Publications

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

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