Last month, COTA participated in a panel at The Atlantic’s People v. Cancer, an annual event that brings together researchers, providers, patients and innovators to illuminate stories from the frontlines of the cancer community. Here are a few of the discussion points we found particularly compelling:
In this panel, Dr. Norden, Kathy Giusti of the Multiple Myeloma Research Foundation (MMRF) and Dr. Dara Richardson-Heron from the National Cancer Institute (NCI) shared various ways to accelerate research and improve cancer care by using patient data.
Dr. Norden explained COTA’s approach of partnering with provider organizations to curate fragmented, confusing EHR data to uncover insights. These insights can reveal how treatments work in the real world and the associated outcomes which may differ from individuals enrolled in clinical trials.
The panelists shared complementary points of view on three methods to collect data and unlock insights at various points in the patient journey:
There have been remarkable strides in treating cancer in recent years. Scientists and clinicians have harnessed the human immune system — the body’s natural defense mechanism — to identify and attack cancer cells. Immunotherapy has made diseases that were uniformly fatal manageable in a growing number of circumstances. This panel at People v. Cancer specifically addressed these innovations and their ability to be scaled to address major gaps in treatment.
Author Kate Bowler and palliative care doctor Sunita Puri provided one of the most moving discussions of the day in their panel about the emotional support that doctors can provide to patients by humanizing their approach to care. Rather than “outcomes language” or “probability speak,” patients benefit from personalized, simple explanations about their disease and the effect it will have on their quality of life.
In a very emotional moment, Kate tearfully described the time she asked her doctor how long she had to live after being diagnosed with cancer. He responded that he could “only answer based on the probability of the outcomes for someone with your diagnosis” and that she had a 30-50% chance of survival. At this point, she grabbed her doctor’s hand and said, “you better be holding my hand if you’re going to say stuff like that.”
Dr. Puri explained her approach to palliative care and advocated for its inclusion in the care plans of all cancer patients. She challenged the audience to reevaluate their definition of palliative care explaining that it is about ensuring the best quality of life at all stages of the patient journey and not simply end of life.
Being a cancer patient remains extremely difficult, beyond the obvious challenges of undergoing treatment and how it impacts immediate families while fighting for their lives. Anxiety, depression, and other mood disturbances are extremely common in patients with cancer. They can seriously impair quality of life for patients and tend not to get the amount of attention they require. Patients need help identifying resources where they can turn to address these issues.
One novel approach discussed at People v. Cancer that has shown some remarkable preliminary evidence of efficacy for severe depression involves the use of psilocybin in a supervised setting with a psychiatrist. We also heard about the importance of a community-wide effort to support individuals and families through the cancer journey. The resources each patient and family need vary, and a personalized approach is critical to achieving optimal outcomes.
Although there is no current evidence to support a particular diet for patients with cancer, there is emerging evidence that certain foods eaten over longer periods of time may impact risk of certain cancer types. This is an increasingly active area of research. Related to prevention, everyone – from researchers to physicians to the general public – is keen to understand if proactive changes can be made early to reduce cancer risk.
Dr. Nagi Kumar, Senior Member of the Moffitt Cancer Center, spoke in depth about this topic. Looking at other cultures, researchers can begin to understand where links may already exist between certain foods and cancer risk. For example, in populations that have a higher intake of green tea, there is a lower rate of prostate cancer, and those who do develop this cancer often have less aggressive subtypes. Dr. Kumar argues that by seeing this association, researchers can work to identify what specific chemical elements of green tea affect prostate cancer cells in vitro.
Also related to proactive prevention and screening, the field of genetic cancer risk continues to evolve and is helping to identify patients who may benefit from tailored screening approaches or even prophylactic interventions with medicine or surgery. A more novel approach is the emerging ability to detect cancer very early using blood biopsy. Although not yet ready for prime time use in most individuals, it is becoming increasingly realistic to imagine a future in which a blood test can identify cancers at early, curable stages.
Adopted on a widespread level, this could have a major impact on cancer survival rates, how we treat cancer, and how we identify those at risk of this disease. Cancer does not manifest the same way in every patient – even in the same “type” of cancer. Having a way to proactively screen even in the absence of physical symptoms would be a tremendous advance in patient care.
Survivorship and the patient journey were consistent themes throughout the day. We heard from people at all stages of this disease who shared heartfelt, honest, and inspiring stories of how cancer has changed their lives.
Through advances in preventive care and screening, many of these stories provide hope for others currently fighting this disease, and aid in informing their family members of their own risk. There were incredibly profound and touching examples of people who have survived against all odds - sometimes facing repeated bouts of cancer - yet they continue to survive and thrive. These stories give us hope and make us even more resolute in our efforts to bring clarity to cancer care to improve the lives of those touched by cancer.