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

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.