GRACE recently held a very successful patient forum on the lung cancer associated ALK rearrangement and treatments for it, and it began with our focusing on how patients and caregivers sought information and work with their doctors. Though it may have been reflective of the specific audience there, who came from a specific online community, I was struck by how much support and information patients gained from each other. I knew that patients could be remarkably sophisticated and share detailed knowledge at a level that rivals and may well exceed the level of conversation among cancer specialists, but it was remarkable how many of the patients and caregivers there expressed that there is a particular expertise and credibility that comes from gaining insight from someone who has traveled down the same road as you. In this sense, patients with a deep knowledge can convey an understanding and provide a hope that even the best doctor can’t offer: living proof that you can know this and do as well.
In preparation for this program, some of us planning this event also debated whether to convey survival data in the usual tables and figures that are shared among oncologists. Specifically, does a detailed discussion of statistics confuse people, scare them, or inform them?
Also, some patients expressed a strong desire for self-determination of their treatments, while others conveyed that above all else, what they’re looking for from a trusted oncologist is a clear recommendation of a best way to proceed based on their knowledge.