Back in 2009, GRACE did a live educational meeting in Seattle, geared toward patients and caregivers, that coincided with a lung cancer conference offered to physicians. It included brief (~15 minute) talks by about 10 different specialists, ranging in topics from initial workup to what surgery entails, new options in radiation therapy, optimal management of patients with early stage and locally advanced lung cancer, as well as discussion of emerging new treatments for advanced lung cancer. The talks were specifically for patient, quite dynamic, and delivered by leaders in the field.
But we only had about 15 patients or caregivers in the audience for the free event. It was there that I realized it costs a lot of money for printed materials, room rental, food, and all of the niceties of a “brick and mortar” event where people actually speak in person, in contrast to online activities in which the content is available over the internet and podcasts, but we don’t worry about reaching a live audience. Since then, we’ve done dozens of webinars, with attendance that has ranged from no attendees to 30 or so, even with a reach all over the world. And I’ve continued to wonder whether there’s a reason to ever do a live meeting with people actually converging to the same room.
At the same time, since then the cancer world has changed, as we’ve moved from a world of ”lung cancer” as a big group (and our live event covering a very broad range of lung cancer in just a few hours) to a world in which there is growing focus on narrow subsets of patients with specific issues — acquired resistance to a targeted therapy, bronchioloalveolar carcinoma (BAC), immunotherapies, etc. And we’re starting to think again about the feasibility of doing a live meeting format, but now focusing on it being a symposium focused on a specific issue. and the question is whether you would be interested in attending a meeting featuring various experts in the field as well as a role for the patient perspective.
Among the leading ideas at this moment are a forum for patients with an ALK rearrangement, for instance, bringing in a critical mass of 10-20 or more patients from various places to meet some of the people who have developed these agents, have a discussion about the development of these drugs and current trial options, and perhaps brainstorm the barriers in getting these trials completed. We’re thinking about doing this as a half-day program coordinated with the Santa Monica Targeted Therapies in Lung Cancer Conference in late February.
Similarly, we’ve been brainstorming having a half to full-day symposium on bronchioloalveolar carcinoma, recognizing that there is a huge gulf between actual data and what many leaders in the field consider the best approaches to management. Perhaps meeting in Seattle or a central location like Chicago, we’re thinking of bringing together medical oncologists, radiation oncologists, surgeons, pathologists, a radiologist, and perhaps pulmonologist along with patients trying to manage with BAC, to discuss current controversies and our perspectives on best treatments. The discussion would represent a presentation of what we might well consider to be the state of the art in the field.
I could easily envision doing a conference like this for the question of acquired resistance to targeted therapies like EGFR and ALK inhibitors.
Ideally, we’d even stream the content to other people around the world, and then use the content from these programs to create an e-book and/or compilation of videos we’d hope to make available on demand.