The “Black Box” of Medicine: Awareness and Access to All Possibilities
The phone call came, and she said, “the doctor told us there is no test or good treatment for the melanoma brain mets”. I immediately responded, “while this might be true, I believe there is a test that can confirm this is cancer in the brain and possibly give us some ideas on therapeutics that might help”. Within 1 week we had my soon to be Father-in-Law in with a neuro-oncologists office where he would have a spinal tap to test his spinal fluid for tumor cells by use of a novel test that has showed superior sensitivity, over the standard of care, for detecting cancer cells in the spinal fluid.
In my 20+ years of cancer diagnostics this scenario is more the norm than the rare occurrence. With over 75,000 new diagnostic tests developed each year, there is an absolute overwhelm of new information brought to clinicians that nearly make it impossible for them to know not only the “what” is available, but even the understanding of what is a clinically useful test over a test that might not have good clinical validity and utility.
This week I participated in many of conversations on the topic of adoption of biomarker testing for precision oncology. I found myself repeating the same thing which was “how do you build adoption when you do not even have full awareness and understanding”. To break it down even further, we must consider a critical statistic that has been published. The 2018 publication on Statista • Minutes US oncologists spend with each patient 2018 | Statista suggests that oncologists spend an average of 13-16 minutes per patient visit. Now, I would hedge to bet that with virtual visits added to the clinic, hospital, and infusion schedules; time is possibly more limited between physician-patient. Does this leave much time to discuss and explain complex topics such as “comprehensive genomic profiling” and associated “targeted therapies”, especially with an advanced cancer patient?
My colleagues and I would often say, “there is no diagnosis unless there is a tissue diagnosis”. While we use imaging to detect cancer, we most often confirm a cancer diagnosis, and we classify the cancer through pathology review. In my 20+ years personal experience with cancer amongst family, friends, and friends of friends that I have had the honor of helping, not even one of these individuals even knew what testing was performed, who performed it, or what testing HAD NOT been performed. Since we do not visit a pathologist for our care, some may call this the “black box of medicine”. Furthermore, testing is so complex and an imperfect science, any individual person would have a hard time understanding what these even mean in relation to their disease. My final questions are: Is it time that, at a minimum, we let a person know what IS POSSIBLE? If we know the disease and we know there might possibly be a better test for the scenario, regardless of cost, how do we present the pathway to access that possible test? Is it time we give people the ability to decide if they want to pay for the test on their own instead of saying “your insurance doesn’t cover it so we can’t order it”? Is it time, that at minimum, we say “access to care” means awareness of what even exists?
In closing, my Father-In-Law was initially sent home thinking he had 6 months to live and there was nothing for him. This is not a pointing of the finger but rather to say we must do better at directly informing people of all possibilities in testing, treatment, and clinical research. When we open up this “black box of medicine” a bit more, in a unified way, it is my belief that people of all demographics will gain awareness and access to the best possible care.
