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Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project

Underserved patients face substantial barriers to receiving cancer genetic services. The Cancer Health Assessments Reaching Many (CHARM) study evaluated ways to increase access to genetic testing for individuals in underserved populations at risk for hereditary cancer syndromes (HCS). Here, we repor...

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Autores principales: Okuyama, Sonia, White, Larissa L., Anderson, Katherine P., Medina, Elizabeth, Deutsch, Sonia, Ransom, Chelese, Jackson, Paige, Kauffman, Tia L., Mittendorf, Kathleen F., Leo, Michael C., Bulkley, Joanna E., Wilfond, Benjamin S., Goddard, Katrina AB, Feigelson, Heather Spencer
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10271961/
https://www.ncbi.nlm.nih.gov/pubmed/37126135
http://dx.doi.org/10.1007/s12687-023-00647-x
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author Okuyama, Sonia
White, Larissa L.
Anderson, Katherine P.
Medina, Elizabeth
Deutsch, Sonia
Ransom, Chelese
Jackson, Paige
Kauffman, Tia L.
Mittendorf, Kathleen F.
Leo, Michael C.
Bulkley, Joanna E.
Wilfond, Benjamin S.
Goddard, Katrina AB
Feigelson, Heather Spencer
author_facet Okuyama, Sonia
White, Larissa L.
Anderson, Katherine P.
Medina, Elizabeth
Deutsch, Sonia
Ransom, Chelese
Jackson, Paige
Kauffman, Tia L.
Mittendorf, Kathleen F.
Leo, Michael C.
Bulkley, Joanna E.
Wilfond, Benjamin S.
Goddard, Katrina AB
Feigelson, Heather Spencer
author_sort Okuyama, Sonia
collection PubMed
description Underserved patients face substantial barriers to receiving cancer genetic services. The Cancer Health Assessments Reaching Many (CHARM) study evaluated ways to increase access to genetic testing for individuals in underserved populations at risk for hereditary cancer syndromes (HCS). Here, we report the successful implementation of CHARM in a low-resource environment and the development of sustainable processes to continue genetic risk assessment in this setting. The research team involved key clinical personnel and patient advisors at Denver Health to provide input on study methods and materials. Through iterative and collaborative stakeholder engagement, the team identified barriers and developed solutions that would both facilitate participation in CHARM and be feasible to implement and sustain long term in clinical care. With a focus on infrastructure building, educational modules were developed to increase awareness among referring providers, and standard methods of identifying and managing HCS patients were implemented in the electronic medical record. Three hundred sixty-four DH patients successfully completed the risk assessment tool within the study, and we observed a sustained increase in referrals to genetics for HCS (from 179 in 2017 to 427 in 2021 post-intervention). Implementation of the CHARM study at a low-resourced safety net health system resulted in sustainable improvements in access to cancer genetic risk assessment and services that continue even after the study ended. Trial registration NCT03426878
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spelling pubmed-102719612023-06-17 Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project Okuyama, Sonia White, Larissa L. Anderson, Katherine P. Medina, Elizabeth Deutsch, Sonia Ransom, Chelese Jackson, Paige Kauffman, Tia L. Mittendorf, Kathleen F. Leo, Michael C. Bulkley, Joanna E. Wilfond, Benjamin S. Goddard, Katrina AB Feigelson, Heather Spencer J Community Genet Research Underserved patients face substantial barriers to receiving cancer genetic services. The Cancer Health Assessments Reaching Many (CHARM) study evaluated ways to increase access to genetic testing for individuals in underserved populations at risk for hereditary cancer syndromes (HCS). Here, we report the successful implementation of CHARM in a low-resource environment and the development of sustainable processes to continue genetic risk assessment in this setting. The research team involved key clinical personnel and patient advisors at Denver Health to provide input on study methods and materials. Through iterative and collaborative stakeholder engagement, the team identified barriers and developed solutions that would both facilitate participation in CHARM and be feasible to implement and sustain long term in clinical care. With a focus on infrastructure building, educational modules were developed to increase awareness among referring providers, and standard methods of identifying and managing HCS patients were implemented in the electronic medical record. Three hundred sixty-four DH patients successfully completed the risk assessment tool within the study, and we observed a sustained increase in referrals to genetics for HCS (from 179 in 2017 to 427 in 2021 post-intervention). Implementation of the CHARM study at a low-resourced safety net health system resulted in sustainable improvements in access to cancer genetic risk assessment and services that continue even after the study ended. Trial registration NCT03426878 Springer Berlin Heidelberg 2023-05-01 2023-06 /pmc/articles/PMC10271961/ /pubmed/37126135 http://dx.doi.org/10.1007/s12687-023-00647-x Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Research
Okuyama, Sonia
White, Larissa L.
Anderson, Katherine P.
Medina, Elizabeth
Deutsch, Sonia
Ransom, Chelese
Jackson, Paige
Kauffman, Tia L.
Mittendorf, Kathleen F.
Leo, Michael C.
Bulkley, Joanna E.
Wilfond, Benjamin S.
Goddard, Katrina AB
Feigelson, Heather Spencer
Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project
title Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project
title_full Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project
title_fullStr Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project
title_full_unstemmed Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project
title_short Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project
title_sort evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the charm research project
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10271961/
https://www.ncbi.nlm.nih.gov/pubmed/37126135
http://dx.doi.org/10.1007/s12687-023-00647-x
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