It bothers me when doctors, journalists, & others lump together:
- disabled & chronically ill patients who read papers/research their own medical issues AND
- able-bodied anti-vaxxers/conspiracy theorists who use "do your own research" to justify anti-science 1/ #NEISvoid
Patients w/ chronic illnesses & disabilities have 3 types of expertise:
- physical experience of their illness/disability
- how to navigate medical system, which is traumatizing
- in many cases: deep scientific knowledge, from keeping up on relevant research 2/
Able-bodied anti-vaxxer/conspiracy theorists typically don't have any of the above 3 types of expertise, which is why I think we need to draw more careful distinctions when talking about "patients doing their own research" in a derisive way. 3/
Most doctors have unreasonable demands on their time; medical knowledge is incredibly vast and nobody can keep up on more than a subset of it; and many patients have the deep motivation to stay informed on research relevant to their lives. 4/
A baseline level of scientific literacy is really important/helpful when interacting with the medical system. Many patients have this. However, some doctors are hostile towards patients reading papers. 5/
Some people with chronic illnesses/disabilities do get pulled in to conspiracy theories out of desperation, but in general, it is harder for us to ignore many of the realities of infection & public health, since it so directly impacts our lives 6/
I am still figuring out how to articulate this tension 7/

Important point on how non-doctors are derided for trying to learn, which won't lead to good outcomes. I'm reminded of the New Yorker article by a doctor who spent the whole article mocking a patient & trying to make her seem as ignorant as possible. 8/

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More from @math_rachel

14 Oct
Stories like this are sadly common. When MDs discourage everyone else (even STEM PhDs) from reading medical literature, this really does NOT help us create a society with higher scientific & medical literacy.
Problems with "appeal to authority" arguments:
- many ppl are more motivated when they know the underlying reasoning/mechanism/data
- doesn't build underlying scientific knowledge or critical thinking skills
- science is messy & always evolving
- discourage interdisciplinary work
I value interdisciplinary work, which entails encouraging others to learn about your field & engage with it, and recognizing that their other perspectives/skills/domains that can be relevant & shine new light on your area.
Read 4 tweets
13 Oct
It is funny when the "only doctors are allowed to speak about public health" crew suggests I wouldn't want outsiders weighing in on AI, because one of my core values/driving motivations is that I want people from all backgrounds involved with AI & AI ethics 1/ slide saying: ethics issues underscore why we need everyone
Most problems related to AI/automated systems are inherently interdisciplinary, benefiting from having experts from many domains involved, spanning STEM, social sciences, and the humanities.

And those who are most impacted by a system should be centered most. 2/
Too often, there has been unnecessary gatekeeping & credentialism in AI, narrow definitions of who has the "right" background. I talk about this more here, but our vision for fast.ai was a community for ppl w/ the "wrong" backgrounds. 3/

bit.ly/rachel-TEDx slide reading: AI needs more unlikely people
Read 7 tweets
13 Oct
We need more nuanced ways to talk about medical & public health disagreements, without the simplistic black-and-white reductions that you either trust ALL doctors in ALL matters OR you must be anti-science. 1/
"Science is less the parade of decisive blockbuster discoveries that the press often portrays, and more a slow, erratic stumble toward ever less uncertainty." @zeynep 2/

Pundits urge people to “listen to the science,” as if “the science” is a tome of facts and not an amorphous, dynamic entity. @edyong209 3/

Read 28 tweets
12 Oct
My new essay: In topics ranging from covid-19 to HIV research to the long history of wrongly assuming women’s illnesses are psychosomatic, we have seen again and again that medicine, like all science, is political.

fast.ai/2021/10/12/med… 1/
We are not prepared for the surge in disability due to #LongCovid. The physiological damage covid causes can include cognitive dysfunction, GI immune system damage, immune dysfunction, increased risk of kidney outcomes, dysfunction in T cell memory generation, pancreas damage, 2/ Experts warn that we are not prepared for the surge in disab
We are seeing concerted efforts to downplay the long-term health effects of covid using strategies straight out of the climate change denial playbook... Many have a significant financial interest in distorting the science around long term effects of covid. 3/ As the evidence continues to mount of alarming long term phy
Read 9 tweets
11 Oct
Designing recommender systems to depolarize:
- algorithmic social media isn't primary driver of polarization, but could be useful intervention
- goal: to transform conflict, not to suppress or eliminate it
- 3 stages: moderation, ranking, & user interface
paper by @jonathanstray Abstract Polarization is im...
Polarization is involved in variety of feedback loops:
- it leads to less intergroup contact, which causes polarization
- it is a precursor to violence, which causes
- polarization it leads to selective information exposure, which causes polarization

arxiv.org/abs/2107.04953 Or as Ripley puts it: The c...
3 key places where changes to recommender systems could be used for depolarization:
- which content is available (moderation)
- which content is selected (ranking)
- how content is presented (interface) 4 Algorithmic depolarizatio...
Read 5 tweets
5 Oct
Pundits urge people to “listen to the science,” as if “the science” is a tome of facts and not an amorphous, dynamic entity. The naive desire for science to remain above politics meant many researchers were unprepared for a crisis that was both scientific & political to its core. Pundits have urged people to “listen to the science,” as
The pandemic hasn’t just been a science story. It is an omnicrisis. One must understand not just virology, but also the history of racism & genocide, the carceral state, nursing homes, historical attitudes toward medicine, social media algorithms, & more.
theatlantic.com/science/archiv… But the pandemic hasn’t just been a science story. It is a
Much of journalism is fragmentary. For science, that means treating individual papers as a sacrosanct atomic unit and writing about them one at a time. But for an omnicrisis, this approach leads only to a messy, confusing, & ever-shifting mound of jigsaw pieces. @edyong209  Much of journalism is fragmentary: Big stories are broken d
Read 4 tweets

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