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. 2023 Jun;14(3):329-336.
doi: 10.1007/s12687-023-00647-x. Epub 2023 May 1.

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

Sonia Okuyama  1 , Larissa L White  2 , Katherine P Anderson  3 , Elizabeth Medina  3 , Sonia Deutsch  3 , Chelese Ransom  4 , Paige Jackson  4 , Tia L Kauffman  5 , Kathleen F Mittendorf  6 , Michael C Leo  5 , Joanna E Bulkley  7 , Benjamin S Wilfond  8   9 , Katrina Ab Goddard  7   10 , Heather Spencer Feigelson  2
Affiliations

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

Sonia Okuyama et al. J Community Genet. 2023 Jun.

Abstract

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.

Keywords: Barriers; Genetic services; Research collaboration; Research implementation.

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Conflict of interest statement

Sonia Okuyama, Larissa L White, Katherine P Anderson, Elizabeth Medina, Michael C. Leo, Joanna E. Buckley, Katrina Goddard, Chelese Ransom, Paige Jackson, Tia L. Kauffman, Benjamin S Wilfond, and Heather S. Feigelson declare that they have no conflict of interest.

Kathleen F. Mittendorf discloses salary support from NIH/NCI for the development of the PREMM model (R01CA132829, PI: Syngal; role: co-investigator), salary support from NIH/NCI (U01CA232829; MPIs: Wiesner & Orlando; role: study personnel), and salary support from NIH/NHGRI (U01HG011181; MPIs Roden, Velez Edwards, & Wei; role: study personnel) for studies involving the implementation of the MeTree family history tool including in safety-net settings and salary support from funds awarded to their institution by GE Healthcare (PI: Park; role: study personnel).

Figures

Fig. 1
Fig. 1
Description of CHARM study
Fig. 2
Fig. 2
Number of outgoing genetic referrals for HCS at DH. *2022 data is for the first 4 months alone
Fig. 3
Fig. 3
Number of genetic counseling and testing results captured with the “genetic test results” label in the EMR. *2022 data is for the first 4 months alone
See this image and copyright information in PMC

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