I have been an ardent supporter of patient engagement. To me, it seems obvious: patients do better when they have a say in their care, and when they get their needs met earlier rather than later. In the past few years, I have seen—and been excited to see—patients emerge as important voices in the direction of research as well. I have seen Twitter utilized to help inform study designs (shout out to Julie Gralow, MD) and now, we have advocates seated on committees in our National Clinical Trials Network Cooperative Groups, some of whom I consider friends (shout out to SWOG, Jonathan Sommers, Ginny Mason, and AnneMarie Cicarella). There is a growing recognition that the patient voice on trials are important—that it cannot be “just” about survival outcomes. We need to understand the quality of that survival, and patient-reported outcomes (PROs) are designed to tell us that. Yes, patient engagement improves the quality of life for our patients. Indeed, it has been borne out by randomized trials.
At the Plenary Session of this year’s ASCO Annual Meeting, which just wrapped up, the results of a longitudinal trial begun in 2007 showed me that engagement is much more important that I had imagined. Dr. Ethan Basch had started his project while at Memorial Sloan Kettering Cancer Center and enrolled over 700 patients with metastatic cancer to a randomized trial of usual care or to an electronic capture system where they self-reported symptoms weekly (Basch E, et al. JAMA. 2017; Epub June 4). For those patients in the experimental group, severe or worsening symptoms prompted an email alert to a clinical nurse caring for the patient and each patient’s symptom burden was reported to their clinician at their next visit. For those in the usual care group, patients were allowed to call in between visits for symptoms of concern. With a median follow-up of 7 years, overall survival was better among those who self-reported by 5 months, a statistically and clinically meaningful outcome.
I was in the audience as Ethan presented his work (I am proud to say we go “way back” to our days at MSKCC). These were significant findings—engagement was associated with a survival advantage. I Instagrammed multiple graphs, tweeted major findings, and in the end, concluded with the following tweet:
Patients able to self report: got help earlier (less ED visits) and stayed on tx longer. Translation: Engagement inproves survival. #asco17
— Don S Dizon (@drdonsdizon) June 4, 2017
Among the most significant findings at ASCO 2017 (and there were many), this stands out to me. It brought home the point that even in the era of precision therapy and immuno-oncology, simple interventions can make huge differences. In this case, something obvious as giving our patients the means to let us know how they are doing, coupled with the infrastructure to act on this information, not only made them feel better, but produced a survival advantage that paralleled (maybe even surpassed) the latest treatments being celebrated on the main stages across ASCO.
For this, I lend my heartfelt congratulations to Dr. Basch, to Memorial Sloan Kettering Cancer Center, and to the Scientific Program Committee of ASCO for recognizing the importance of patients and the work that has been accomplished.