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Cancer Grand Challenges 2024 Summit: An eDyNAmiC Patient Advocate’s Impression

March 25, 2024

Cancer Grand Challenges 2024 Summit: An eDyNAmiC Patient Advocate’s Impression

March 25, 2024
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We are delighted to feature a guest post from one of Team eDyNAmiC’s Patient Advocates, Shirin Khalili. Below, Shirin reflects on the Cancer Grand Challenges (CGC) annual Summit held in London, UK, 6-8 March 2024. The Summit brought together over 250 members from the CGC community to network, discuss new findings, collaborate, and learn more about each team’s scientific progress.

I joined Team eDyNAmiC in September 2023, so the 2024 CGC Summit was the second for the team and the first for me. The collaboration during online bi-weekly meetings is already so fluid that it’s hard to tell how many different research groups make up eDyNAmiC, so you can just imagine how much more the ideas multiply when we meet in person. As a scientist, the measurable impact of this atmosphere on research progress makes me wish all researchers felt such freedom to ask “odd” questions and accept suggestions in complete psychological safety. As a patient advocate, the down-to-earth and inclusive leadership that asks for our perspectives and acts accordingly is revolutionary. At the start, Lead Patient Advocate Dave Chuter asked “Where is the hope for patients?” and two years later, there is a clinical trial recruiting patients! I’m not used to seeing scientists listen to lay people.

I’m really fortunate to be a part of this group because patient advocates in other collaborations may not necessarily feel the same way. The reason I’m not used to seeing scientists listen to lay people is precisely because it’s unusual. At the networking reception during the summit, I talked to a scientist from a different research group. He was skeptical about the extent to which ecDNA drives cancer biology and even more skeptical about the role of patient advocates in projects like this. My first internal reaction was to get defensive, but before it could take over my response, a mannerism or something he said reminded me of my late brother. My beloved brother who had inspired me to become a scientist and yet drove everyone up the wall with his talent of relentless provocation. Seeing him with this inner affection, I pointed to an example in research as a reminder that scientists should not become too attached to particular theories if we want knowledge to progress and finally help patients. I assured him that the upcoming piece of science I will write for the general public will be balanced with the necessary disclaimers because we are all on a perpetual learning curve. As for his skepticism about the role of patient advocates, of course he wants to see the evidence. I’m not worried.

“There are no forbidden questions in science, no matters too sensitive or delicate to be probed, no sacred truths.” –Carl Sagan

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