Please include more patients at our medical meetings

As a consumer and admirer of movies, I always look forward to the Academy Awards.  A celebration of the best movies and performances of the past year.  A night filled with spectacular performances, glamor, and amazing speeches. The speeches are truly special for me since we get a glimpse into the true character and soul of the award winners as they thank those who helped them along their journey.

I feel like national medical meetings have similar qualities. We celebrate the research, clinical trials, and breakthroughs over the past year. The highlights for me are the presentations by thought leaders in the field. Every presentation ended by acknowledging their collaborators and patients who gracefully participated in their research. I recently attended a meeting where they actually included a patient on the panel. And it made me wonder, how we can make this a norm rather than the exception?

I was privileged enough to recently attend the Genitourinary Cancers Symposium.  This annual meeting brings together urologists, radiation oncologists, medical oncologists, patient advocates, and others focused on improving the diagnosis and treatment of patients. The first seminar focused on the controversial topic of active surveillance in men diagnosed with prostate cancer. We have wrestled for many years with the question of optimal treatment of low-grade prostate cancer. Recent data have begged the question of whether we are overtreating these tumors.  Overtreatment can lead to morbidity and complications from the treatment. A third option has now evolved in men with these tumors, active surveillance (which is defined as close monitoring and treatment only upon progression). This meeting highlighted the largest trial conducted comparing active surveillance, surgery, and radiation for men with newly diagnosed low-grade prostate cancer.

The meeting started with a panel of experts from around the world to discuss this topic, including the lead author of this key study. I was amazed to hear that included in this discussion would be a patient diagnosed with prostate cancer. This was the first thematic meeting I have attended where a patient was actually on the panel of discussants. The patient’s story served as the framework for the key data that was to be presented. I have often seen patient cases serve as a foundation for the discussion, yet never with the patient actually sitting up on the panel.  The talk was about to end, and the experts then turned then to the patient to get his perspective. What transpired next reminded me how essential it is to blend the science and art of medicine with the patient sitting in front of you in your office every day.

The patient presented his story with courage and honesty. When the patient was told that his biopsy contained the “C” word, he was crushed and needed a helping hand to guide him with what to do next. Unfortunately, the patient’s initial visit was with a doctor who practiced a more paternalistic style of medicine. Instead of listening to the patient, the doctor popped in a video and told the patient he knew the best option for his case, and it was truly the only option. The patient had done did his homework and was shocked to hear that the only option was surgery for his low-grade cancer. I felt that the medical field had let him down since we should serve the patients rather than our own individual egos. The patient researched on his own and found a doctor who was willing to listen to him, respect his wishes, and they formed a team to battle his disease. He decided not to treat his cancer and to pursue active surveillance. He wrestled with not treating his cancer and did have some anxiety about whether he made the right decision. Over time, with his doctor by his side, and with close monitoring, his disease continued to remain low grade without progression to a more aggressive phenotype. His decision for no treatment has also spared him the side effects usually seen with radiation or surgery. He ended the session by stating, “Doctors need to learn to educate patients better.” Those words inspired me and should severe as a rallying cry for all doctors taking care of patients.

Medicine remains an art in handling the subtleties of the pros and cons of each option we present to our patients. We need to understand that every patient comes in with a different frame of reference and level of sophistication regarding their diagnosis. It is in finding that common ground and mutual respect where we will find success in empowering our patients with the education they need to make the right decision. There is never any right answer, I believe, in these situations, except for the decision you and the patient make together. Our patient needed that respect, and I believe we failed him. His courage in sharing his story along with experts in the field was something I will truly never forget.

In oncology, we wouldn’t be anywhere without our amazing patients. During our national meetings, when we describe cases and show CT scans and labs, why can’t we take the next step and have patients tell their stories in their own words? It would be wonderful if we have the patient’s voice during these meetings weaving in with all the great education and research being disseminated. In the patient’s words, we can learn about their journey and the emotional burden of a cancer diagnosis. We can learn why they chose clinical trials and see firsthand how these trials have helped them.

We are blessed in oncology with wonderful patient advocacy groups; yet, I feel we can include more patients in our meetings. I am not sure of the logistics and the best way to fulfill this goal; however, I am excited by this first step, and I look forward to the future, with patients at the forefront of national meetings to come.

Prateek Mendiratta is an oncologist.

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