My last #hackathon & #socialenterprise pitch was to improve minority participation in #clinicaltrials. This trial is has 74% black participants compared to usual 2.5%. Why?
Yes, we do need to expand access. Colon cancer kills.
In trials for new therapies however, you see this:
“Even though heart conditions disproportionately affect Black individuals, they accounted for only 2.5% of clinical trial participants in a global trials report by the Food and Drug Administration.”
So black participants are the majority in WHICH studies?
Having been in executive suite, speaking on #access broadly, I saw non-clinicians use “access” to shame clinicians on self care or pointing out workplace issues. Yet same administrators would cut number of staff for budget
So I am always torn. In Pakistan, in many #LMIC countries, we see lady/lay health workers extending #access, often in more culturally matched ways, in villages, to promote #populationhealth. Still, admittedly, Pakistan has clear division between “haves” & “have nots”
The reason behind much of it is cost when healthcare consumes 20% of our GDP.
Invasive procedures are high risk. Perforating the bowel is pretty bad & needs not just skill but right setting... why outpatient invasive procedures tend to worry me.
We do need to always use multiple lenses. There is this precedent and concerning history. We need trials in biomedical space to have more minority participants, not just the ones that, frankly, are driven by administrator priorities to reduce costs.
I looked up the authors. The senior author is a black male physician originally from Jamaica, with ~200 peer reviewed articles. Lead investigator is a white female nurse practitioner
Diverse team ✅
Am genuinely curious how you get 74% black participants in a study tho.
Would have liked more info on those excluded and why as well as which patients were approached but refused participation.
They say they will lower costs and fit into value based care.
Lower costs.. for whom? Government? Insurance? Hospitals? Patients?
Patients would prefer less invasive, I imagine. Lower risk. That colon prep I have done at least twice (all the hospitalizations as a kid) no fun.
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I state, highlight, mark up, not insinuate
Why is someone who likely does not menstruate a sudden expert on #womenshealth to identify a WOC seeking #data#quality & #integrity as the threat...to women?
"Respecting" social science = using respectable methods, not online surveys.
Academic language on #online#survey#data:
"systematically assess carelessness in a crowdsourced sample" Denial that quick & dirty is poor #quality is an odd use of time & ineffective. One could better defend one's merit, by delivering #quality per best practices and standards.
LOVE being faculty at @MIT this semester for a class on #dataanalytics & #datascience. I tend to PM my mentees, especially women and #blackexcellence to start to prepare questions to ask. Too often people stay silent. Speak up. Never be embarrassed to show #curiosity.
Listening right now to mid-semester progress reports from teams and am feeling like such a proud #datascience#BigData#bigdataanalytics momma. Bear cubs doing good (well AND good in world)
LOVE that this is a space within @MIT that focuses on #SDoH and #equity.
Literally right now, hearing about a study on #socialmedia chatter as a driver of vaccines hesitancy driven by #Twitter - start postulate "cause/effect" by an incident that happens within days after a vaccine - like ppl automatically assume a death is "caused" by vaccine
Adding the word "experience" to an online survey of biological & immunological mechanisms does not make it anthropology. People who are spreading online rumors about vaccines need to take a hard look at what they are doing. There are valid ways to collect health data. Use them.
There are real, concerning, harmful gaps in knowledge in #womenshealth. Bad data of the GIGO method of data collection for quick and dirty "research" on "vaccine side effect" merely replaces one harm with another harm. searchsoftwarequality.techtarget.com/definition/gar…
If collecting data, overtly on "vaccine" and "side effect" claiming causation from temporal relation
for "after" on something as highly variable as menses, w/ deliberate inclusion of perimenopause (known menstrual variation)
=methodology used by anti-vaxx
Handling uncertainty has been the work of the last few years. First there was the abyss of #womenshealth issues I fell into following what seemed simple enough egg freezing, then the unearthing of years of remote & recent medical system trauma causing me to question my own work
Oh, cancer monitoring too. & other types of uncertainty
One thing that I changed was my level of frankness. I became much more direct and not concerned with whether what I communicated was liked
You can't be a "pleaser", outwardly focused, & deal with uncertainty from own body
My mom gave me "permission" to be less perfectionist despite that being a trait she had most of her life. You have to develop self-compassion. When you have the latter you seek less external validation
More than that is recognizing control is only ever an illusion. Ride the wave
Every seeming kind of "not a big deal" thing related to #vaccineswork blows up in our faces like death threats via online mobs against #pediatrician#SciComm
May seem extreme but take a look at the escalation of responses to my identifying "bad #data"
We can't wait for yet more false "vaccines affect (THEY DO NOT) fertility" trope to circulate
anyone who is generating data on #vaccine "#sideeffects" needs to think about clean, quality, meaningful data. Junk data: common, but this actually matters
instead of improving, response ~ "not to attack... but am glad you are not my doctor"
Indeed, I engage patients & families 1:1 without forcing them into fields I've pre-created for my #data collection, based on assumptions I have from personal experience
Respecting women & WOC allows people to not be forced into leading questions or pre-created fields
Measuring needs to be #quality to deliver quality. Your #results will never be better than your #studydesign or collection methods. Wrote this cuz we need less measurement & more humanity. I'm in b-school & everyone sends a new survey every 30 sec.. journals.sagepub.com/doi/abs/10.117…