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
First of all, 65% of women have said their cycle was already affected by the pandemic alone - likely due to stress, activity changes, sleep, diet, etc, etc
Anyone can create an online survey in minutes, bypassing all the usual #privacy#quality#safety mechanisms we use to study by valid methods. It gets picked up by the media quickly
=ripe for adding to #vaccine hysteria (here using the uterus for fear)
Gaps in knowledge in #womenshealth and #menstrualhealth and #fertility deserve #quality#data. Distrust of doctors and medical science on this issue is driven by the patriarchal past, primarily towards women of color, especially salves.
As women of color are doctors or in STEM in the U.S. there is a bizarre, often women-driven by non-STEM women
silencing, shaming, & attacking of WOC in science who are seeking to democratize data by *valid*, vetted, verified methods that ensure #data#integrity. #WomeninSTEM
With MMR we had essentially eradicated it. Is NOT the case with #COVID19. We know 65% of women were experiencing menstrual irregularity with the #pandemic alone
= baseline
We know how anti-vaxx ideas got conceived & spread
None of us need self-appointed crusaders to keep adding to this kind of #misinformation on #vaccines that harms real people. Before taking on the heady, ego-affirming, activist role of "I'm going to uncover something about vaccines and menses" - think.
Those who do keyboard activism do not deal with the real-life consequences of what they put out there
WIth zero biological plausibility of single dose of vaccine as "cause" for change in menses in perimenopause or pregnancy, one can only generate nonsense "data" for anti-vaxx
There's the vaccine hesitancy of those harmed in the past, which is logical.
Then there are vaccine conspiracies of anti-vaxx like microchipping and infertilty.
Creating junk data on menses (menstruation=fertility) can only add to the existing fears
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
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…