Anne Taylor, Oncology Roundtable
We recently spoke with Dr. Kathleen G. Allen, F.A.C.S., a private practice breast fellowship trained surgeon at The Comprehensive Breast Care Center of Tampa Bay, in Clearwater, Florida, to discuss her experiences with InformedDNA genetic counseling services.
Dr. Allen works with one other surgeon who sees both breast and melanoma patients. The practice sees approximately 500 breast cancer patients per year. They have partnered with InformedDNA to provide comprehensive genetic counseling services for their patients.
Impetus for outsourcing to InformedDNA
Dr. Allen was trained in genetic counseling for breast cancer risk in fellowship at Thomas Jefferson University, and, in the past, provided genetic counseling to her patients. While she counseled on breast cancer risk and alerted her patients to the elevated risk for associated cancers, Dr. Allen saw a need in her patient population that was broader than what she could provide with her training. Specifically, she wanted a genetic counselor to explain more than just the breast cancer implications of BRCA positivity.
Dr. Allen first considered partnering with an academic cancer program located approximately one-hour’s drive from her practice. However, the long commute for patients and difficulty in negotiating an agreement with the cancer program prompted her to consider other alternatives.
Dr. Allen then learned about InformedDNA at FORCE’s annual conference (FORCE is a national non-profit organization dedicated to individuals with high risk for hereditary breast and ovarian cancer), and she eventually decided to partner with InformedDNA for her genetic counseling services.
After one year, Dr. Allen and patients report satisfaction with InformedDNA services
Dr. Allen reports that her patients find the InformedDNA telephone and online service delivery model to be very helpful. She feels that InformedDNA is convenient and comprehensive, as they offer counseling for more than just breast cancer risk. She feels they provide a high level of service and their recommendations to patients are very helpful. They will expedite results if the outcome will impact a surgical decision (e.g. if the results will change the patient’s decision for single vs. double mastectomy). They provide lifetime and 5-year risk and discuss the various screening and prevention options, such as breast MRI and chemoprophylaxis, with the patient.
Dr. Allen’s practice has been with InformedDNA for one year. The company has counseled 150 of their patients and 10-20 of these patients were found to be BRCA positive. Some of her patients have proceeded with suggested prophylactic measures after counseling.
Finding an on-site genetic counselor very challenging
Dr. Allen reiterated the scarcity of genetic counselors. Additionally, it would have been costly to pay for one, even part time. With InformedDNA, there is no monetary loss. Her practice could not sustain billing for a genetic counselor, so they prefer to outsource to InformedDNA.
InformedDNA bills the patient’s insurance directly. If genetic services are not covered, the patient is informed in advance, and can then decide whether to proceed out of pocket. The cost is usually between $200 and $300 for counseling, so patients may be able to afford it on their own.
Patients likely to follow-through with over-the-phone appointments
Dr. Allen told us that 90% of patients follow through with InformedDNA counseling appointments. Some opt out because they do not feel that knowing their genetic profile will change or significantly impact their health choices.
Recommends outsourced genetic counseling; encourages integration of genetic counselor with care team
Dr. Allen would recommend InformedDNA to her colleagues. She thinks they are an excellent option for meeting the genetic counseling requirements and for ensuring her patients have access to trained professionals who can correctly interpret their testing results.
She noted that in order for genetic risk assessments to benefit patients, the genetic counselor needs to be considered a part of the care team. They should be treated as a colleague and incorporated into the patients’ team of providers, even if they are providing their services over the phone, as in the case of InformedDNA genetic counselors.
InformedDNA encourages their partners to invite genetic counselors to participate in tumor board, speak at grand rounds, and give other presentations about genetic risk assessment.
Overall Dr. Allen views her relationship with InformedDNA in a positive light.
For more information, read our interview with David Nixon, CEO of InformedDNA.