#ASCO20 #bcsm @OncoAlert Let's talk for a sec about "tolerable" TRAEs. Every time I see a report with a laundry list of AEs like diarrhea, rash, myalgia, neutropenia, anemia, etc, etc with a conclusion that "AEs were tolerable" I think "tolerable to who??" Which leads to... 1/
"did you have #advocates involved in the design of your trial?" and its correlate "were they disease AND stage appropriate?" We PWC can help you make your trials better. We can help define meaningful endpoints, and "tolerable" AEs. #ASCO20 #bcsm @OncoAlert 2/
We can ensure your materials speak to the study population - which leads to another point: 1 advocate may not be enough. There needs to be #diversity in advocates, reflecting the populations that will be using the study drug or treatment. #ASCO20 #bcsm @OncoAlert 3/
We can help you recruit #ClinicalTrial volunteers (or as I call them - heroes). We have extensive #SoMe and real world networks. We are certainly motivated to help you succeed because our lives literally depend on #research. #ASCO20 #bcsm @OncoAlert 4/
We can help you disseminate results, which leads to another point: ALL trial heroes should get regular updates on what the trial is showing. You wouldn't have data without them so share it! In a timely manner. #ASCO20 #bcsm @OncoAlert 5/
And when the paper is published make sure every trial hero gets a copy without having to deal with a freaking #paywall!!! Paywalls are the bane of advocates. Someone should sponsor a site where we can access results about us! #ASCO20 #bcsm @OncoAlert 6/
And don't say you can't find an advocate. WE ARE HERE! If your institution doesn't have a patient advocate group, go to an organization like @metavivor or @lbcc or @SusanGKomen Advocates in Science. Or, OMG, you can look on Twitter!!
#ASCO20 #bcsm @OncoAlert 7/
Whew! I wasn't planning on this turning into a rant, but as you can see I am passionate that people with cancer should be at the #research table, from the beginning and through out the process. #NothingAboutUsWithoutUs #ASCO20 #bcsm @OncoAlert fin/
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