In November, I attended the President’s Cancer Panel titled Improving Resilience and Equity in Cancer Screening: Lessons from COVID-19 and Beyond.
This discussion series focused on screening across four cancer types: cervical, breast, lung and colorectal cancers. The panel’s goal is to explore specific issues deemed critical to the National Cancer Program and develop strategies to accelerate improvements in cancer screening.
Much was discussed during the nearly four-hour event by the 32 expert stakeholders on the call. But here are my top five takeaways from the panel focused on breast cancer screening and genetic testing access.
1. Systematic family history assessment is a good place to start
Right now, it’s not feasible to offer genetic testing or advanced cancer screenings to everyone in America — we need to triage patients so those who need it can access it without overwhelming the system.
According to Diana Buist, PhD, MPH, from Kaiser Permanente, the system has tried to identify high- and low-risk patients, starting at age 25, so they can start screening early or undergo less screening. However, the main challenge they’ve encountered is that there is not a systemic family history assessment within their EHR.
Another expert agreed, noting it shouldn’t be the sole responsibility of providers to identify which patients need high-risk breast screening or genetic testing and counseling.
“I just think there has to be an automated workflow and it has to be offered to every single patient versus relying on the providers to identify the patients that need to go through the workflow,” she said.
2. We need to expand who can offer genetic counseling
One of the major barriers to accessing genetic testing is a shortage of genetic counselors. Some insurance companies won’t cover genetic testing unless the member has had a pre-test appointment with a genetic counselor, for instance; and patients need guidance on how to interpret the results of their genetic tests and how to move forward.
“I do think that genetic counselors need to be practicing at the top of their scope and seeing the most complex patients,” says Mary Freivogel, a genetic counselor, sales training lead with Invitae and past president of the National Society of Genetic Counselors. However, she noted not all patients need a visit with a genetic counselor.
Panelists discussed various ways to allow genetic counselors to practice at the top of their license and improve patient access to testing.
Some highlights included:
Advocating for insurance companies to no longer require pre-test counseling, freeing up time for genetic counselors. “You’re going to have a triage system that will disenfranchise the majority of players” if genetic counseling is a prerequisite to genetic testing, said Dr. Steven Narod, director of the Familial Breast Cancer Research Unit and professor at the University of Toronto.
Encouraging genetic counselors and patients to use telehealth, increasing the impact of the limited number of experts.
Allowing doctors who train in genetics to provide genetic counseling to their patients instead of relying solely on genetic counselors, increasing the number of people available to provide guidance to patients.
3. Lack of interoperability and hard-to-reach data hinders adoption
Another barrier discussed at length during the panel was how hard it is for clinicians to access and interpret the results of a genetic test. Some primary care physicians may not even know their patients had a test done, because the results are not in front of them in the medical record.
“We need technology or the EMR right we need the platform to be able to show all of these genetic results within your workflow,” said Susan Stiles, BSN.
When this information is available at the clinicians’ fingertips at the point of care, it can be part of clinical decision support. Right now, most genetic data is stored in inaccessible PDFs in language that is difficult to understand.
4. Primary care physicians need guidance & support
As more patients undergo screening and genetic testing, they turn to their trusted primary care doctor for guidance, even if they had a meeting with a genetic counselor.
“People will talk to counselors but then they go back to their provider,” said Dr. Jacqueline Miller, a board-certified general surgeon and a Captain with the U.S. Public Health Service. “That’s something we’ve heard a lot from primary care providers; they don’t really understand how to interpret these results and what does that mean long-term for their patients.”
The experts discussed making tools available within the primary care providers’ workflow, so doctors have clinical decision support and feel equipped to answer their patients’ questions.
5. The future looks bright
The panelists noted that while many physicians practicing today didn’t learn about genetics in medical school, the clinicians graduating now have been immersed in the subject and will be well-suited to have conversations with patients about the importance of genetic testing and what results mean for them and their future.
“I think the next generation are going to be technologically savvy and they are going to be able to provide better support for their patients than we can ever imagine,” said Dr. Olufunmilayo Olopade, a hematology oncologist with the University of Chicago.
Additionally, the current disruptive period caused by COVID-19 can open the door to new technologies and processes that will lead to wider adoption of breast cancer screening and genetic testing.
And I believe CancerIQ can play an important role in the future of cancer risk assessment and screening.