You Can’t Have Patient Data Without Patients

June 11, 2015

Every year at ASCO, since I started attending the meeting as a fellow back in 2005, there has been a different personal theme for me. Often it is because of the data being presented, the latest breaking drug, or promising novel tumor biology that can be translated into novel treatments.

Every year at ASCO, since I started attending the meeting as a fellow back in 2005, there has been a different personal theme for me. Often it is because of the data being presented, the latest breaking drug, or promising novel tumor biology that can be translated into novel treatments. I remember the first plenary sessions, in rooms the size of a football field, when targeted therapy first showed benefits in renal cell carcinoma and the years following of the paradigm switch to small molecule tyrosine kinase inhibitors. 

More recently, the sexy star of the show has now become immunotherapy and the multitude of ways to harness the immune system with impressive Kaplan-Meier curves flattening out indicating sustainable benefits in a variety of tumor types. But this year, after reading an Art of Oncology editorial in the April 1, 2015 issue of the Journal of Clinical Oncology, by the Canadian Oncologist Daniel Rayson, MD, FRCPC, entitled, "A Bag of Chips," I appreciated his statement: “Running to the plethora of sessions, it is easy to lose sight of the stories that form the gently descending arcs of the Kaplan-Meier curves presented in every room."

I can still remember a 2012 ASCO discussion on “Crizotinib Treatment for ROS1 Rearranged Lung Cancers,” given by Gregory Riely, MD, where he reminded the audience of how the waterfall plots emphasize the stories of individual patients. This is still something I consider with every waterfall plot I see illustrating therapy benefits. Pairing this with spending time with a former patient who is serving as a patient advocate at the ASCO 2015 meeting, the role of patients in the various presentations became very apparent to me.   

I presented at an education session entitled, "Expediting the Learning Curve for Applied Cancer Genomics," at the 2015 Annual ASCO Meeting. My specific presentation, "Using multidisciplinary tumor boards to augment the value of cancer sequencing," highlighted how Moffitt Cancer Center has undertaken the challenge of translating tumor genetic analysis into direct patient care. This includes the creation of a Clinical Genomic Action Committee (CGAC), which serves as Moffitt Cancer Center’s Molecular Tumor Board. The inclusion of the word “Action” was very purposeful and recommended by Howard McLeod, PharmD, Medical Director of the DeBartolo Family Personalized Medicine Institute. 

The rationale was that many of these molecular tumor boards act to showcase unique and rare tumors for academic value without translating this into action that helps the patient. Thus, the CGAC focuses on interpretation of the tumor genetics, but also on what actions can be taken based on the results to help the patient. These discussions are used to form formal patient consult notes that are documented in the medical record and then the information is discussed with the treating oncologist and the patient to determine optimal treatment to be pursued. 

Following the session, several questions were asked that centered on the standardization of levels of recommendation and definitions of clinical actionability. Standardization is helpful to increase objectivity and consistency as well as decreasing the bias of these clinical recommendations. I fully support the need for levels of evidence and advocated for this in my talk, but I think there also has to be an appreciation that algorithms and levels of evidence can only take you so far.

Patient factors must be considered in every recommendation. Ultimately, our consults can only serve as guides for discussion with the patient, and each patient’s unique preferences and disease history are essential to making the final decision. As medicine has evolved with technology and medical policies have further constrained face-to-face time, treatment algorithms have become essential to function in daily practice. However, the art of medicine cannot be lost in these discussions.

Building upon this, a final question asked in our session was from an extremely well-spoken and passionate cancer research advocate, and challenged the panel of speakers about the role of the patient in the molecular tumor board process. Though I don’t feel this may be the optimal way to incorporate such a valuable resource, I do think that patient advocates can play a unique and extremely helpful role in developing ways to have tumor genetic discussions with patients. This final discussion brings the story of genetic data interpretation full circle back to the patient where it started. It is the essence of precision medicine and underscores the need to ensure these discussions are conveying information regarding treatment options, and the complex support behind them in a way that patients can understand and process into personal decisions.   

Finally, my meeting experience of rushing between packed convention center rooms highlighting novel findings in the fight against cancer was augmented by dinners with a stage IV lung cancer survivor, friend, and ASCO Conquer Cancer Foundation Patient Advocate Scholarship awardee. Her amazing survivorship story included a clinical trial with the EGFR-inhibitor, erlotinib (Tarceva). This was prior to the knowledge of EGFR-activating mutations and serves as a direct example of someone whose own waterfall plot showed a complete response in one of those conference center rooms at ASCO.

It is my hope that as the size of ASCO grows and the science continues to tell new stories, that there are many more examples of my friend who exist not only as a data point in a trial, but a person with whom to toast this progress with a fine glass of red wine after the meeting has concluded.