Blueprint for building a patient-centered hereditary cancer program based on stakeholder perspectives

• Program structure, educational offerings, and staff roles are key considerations in establishing cancer genetics services. • New programs should consider incorporating a comprehensive care model to offer surveillance, follow-up, and cascade testing. • Patient and provider education is important to enable genetics referrals and a full understanding of testing results. • Assigning patient-facing versus administrative responsibilities to distinct roles may help to promote clinical efficiency. As the need for clinical cancer genetics services continues to rise, health systems must strategize on how best to deliver this specialized care. In anticipation of establishing a cancer genetics program at an urban medical institution, our objective was to assess key stakeholders’ recommendations surrounding optimal care delivery models and service offerings based on prior experience. We performed virtual key informant interviews with 34 stakeholders from four institutions, including clinical cancer genetics providers, genetic counselors, referring providers, and administrative staff. Important considerations for building a program emerged across three key areas: provider roles, program structure, and education. Stakeholders provided insights on the roles of various program staff, suggesting that genetic counselors maintain versatile responsibilities, genetic counselor assistants function to decrease administrative burden, and genetics providers order downstream tests and imaging for high-risk patients. Stakeholders expressed that cancer genetics programs should provide both initial genetic assessment and follow-up care and should focus on streamlining management of cascade testing, genetic sample collection, and appointment workflows. Creating a standalone clinical cancer genetics program was viewed as beneficial for care efficiency and continuity. Lastly, the ability to offer educational opportunities and resources for patients and providers was highlighted as an essential feature of a clinical cancer genetics program. These recommendations offer potential to aid healthcare systems and clinical practices in the establishment of cancer genetics services.

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Publication Details

Journal
Gynecologic Oncology Reports
Published
2026-03-23
DOI
https://doi.org/10.1016/j.gore.2026.102066
Primary Topic
BRCA gene mutations in cancer
Type
article
Field-Weighted Citation Impact
0.00
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article

Blueprint for building a patient-centered hereditary cancer program based on stakeholder perspectives

R Sharaf, Tamar Nicole Soussana, Muhammad D. Ahsan, Carolyn Baron et al.
Gynecologic Oncology Reports
BRCA gene mutations in cancer
article

Blueprint for building a patient-centered hereditary cancer program based on stakeholder perspectives

R Sharaf, Tamar Nicole Soussana, Muhammad D. Ahsan, Carolyn Baron, Melissa K. Frey, Michelle Primiano, Lauren Mitchell
article en

Abstract

• Program structure, educational offerings, and staff roles are key considerations in establishing cancer genetics services. • New programs should consider incorporating a comprehensive care model to offer surveillance, follow-up, and cascade testing. • Patient and provider education is important to enable genetics referrals and a full understanding of testing results. • Assigning patient-facing versus administrative responsibilities to distinct roles may help to promote clinical efficiency. As the need for clinical cancer genetics services continues to rise, health systems must strategize on how best to deliver this specialized care. In anticipation of establishing a cancer genetics program at an urban medical institution, our objective was to assess key stakeholders’ recommendations surrounding optimal care delivery models and service offerings based on prior experience. We performed virtual key informant interviews with 34 stakeholders from four institutions, including clinical cancer genetics providers, genetic counselors, referring providers, and administrative staff. Important considerations for building a program emerged across three key areas: provider roles, program structure, and education. Stakeholders provided insights on the roles of various program staff, suggesting that genetic counselors maintain versatile responsibilities, genetic counselor assistants function to decrease administrative burden, and genetics providers order downstream tests and imaging for high-risk patients. Stakeholders expressed that cancer genetics programs should provide both initial genetic assessment and follow-up care and should focus on streamlining management of cascade testing, genetic sample collection, and appointment workflows. Creating a standalone clinical cancer genetics program was viewed as beneficial for care efficiency and continuity. Lastly, the ability to offer educational opportunities and resources for patients and providers was highlighted as an essential feature of a clinical cancer genetics program. These recommendations offer potential to aid healthcare systems and clinical practices in the establishment of cancer genetics services.

Gynecologic Oncology ReportsVol. 64
Cornell University (US)
Openalex Percentile: Top 12%
BRCA gene mutations in cancer
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