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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.
But the question I come back to is whether this would end up being a party to which nobody comes. My sense is that, in contrast to more general meetings about a cancer, a specialized meeting about a specific problem that a patient has, whether it's acquired resistance, a rare mutation, or an uncommon cancer type like BAC, would motivate people with these issues to find their way to them. But I've been wrong before.
So I'll ask whether you think there's a meeting for which you would ever be inclined to travel, whether by plane or just across town. Then I'll ask that if you say yes, what topics and locations might work best? It's been long enough since our past disappointments that I'd like to open up the possibility of GRACE doing live, brick and mortar educational activities, but only if there's truly enough interest to justify the cost and effort involved.
What do you think? Is there much hope for live meetings about very specialized topics in cancer that might attract patients and caregivers as well as physician experts in that field?
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Hi elysianfields and welcome to Grace. I'm sorry to hear about your father's progression.
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