This ๐. Might look like *lost in technical detail* but this is precisely the level of detail that matters when you are in cancer, whatever the reason.
From a patient perspective and with the risk of upsetting the maximum number of non-patient people- but don't worry, we do this all for PATIENT BENEFIT DONT WE โฅ๏ธโฅ๏ธโฅ๏ธโฅ๏ธ ๐๐๐๐๐๐๐๐
it's save to assume that our oncologists don't understand translational research nor statisticians. Our Translational researchers don't understand statistics nor the clinic. And surprise, statisticians don't understand neither the translation nor the clinic reality.
And in case there is now OOUHH AHHH BUTTT- just do some smart search on twitter and you'll find plenty of hilarious ๐งต one bitching about the other. And don't forget about the PRIVATE ONES you don't see.
it's obviously SAFE not save ๐
In a nutshell, it's about the quality of the question you ask, the way you measure your outcomes and the analysis of your results. Go wrong in any of them and the overall result is for the bin.
So you want to have a heart-to-heart with your clinicians about what *meaningful* looks to them (that's NOT the trial design, we've had enough *wouldn't it be good to know*s by now)
Get some experts on the translation- and the folks who actually know how to develop biomarkers, there should be a punishment on *exploratory biomarkers on 33 1/2 patients no follow-up ever coming* IMO
And some statisticians who can tell you whether you can trust the data or not. For radiological endpoints, talking to radiologists is a TRUE eye-opener.
So I guess the real art is to find those people who care more about *getting* it right than *being* right. And while it's fun to bitch about how stupid everyone else is, the *real* gems are the people who know what they do know and what they don't.
And if you happen to found a set of a truly observing clinician, a translationist who can turn observation into a valid diagnostic and a statistician to tell you what you can trust and what you can't- that's invaluable
โข โข โข
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It's Friday evening. And today is the day where I've been patient-involved one too many times. So all of you patient-at-the-heart-of-all-we-dos, this is for you ๐งต
I got into patient advocacy because #Melanoma killed my husband in a horrific way. And the healthcare system overall, in particular the clinical trials that were his only option, only added to the insult.
He died barely 37. I was 35. Our daughters 4 and 6. The time between his diagnosis and his death- and the time after- were horrendous. Looking back, I'm not quite sure how I managed. But I DID manage.
Ok. Recently, I have been approached a lot to be involved as patient advocate in grant applications for cancer research projects. Let's call the entire experience *suboptimal*, so here are a few pointers, for researchers and patient advocates alike.
So, I totally get that no one exactly knows what patient advocacy is. I for starters started thinking about it after someone else called me a patient advocate after I which I felt obliged to have an opinion.
I also get that grants are stressful- I have never submitted anything that wasn't last minute (usually minus a margin, I'm not that crazy, usually). And that people read that 'you have to involve a PA'(= patient advocate *not* personal assistant) just before deadline