Thread by @math_rachel

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/

https://twitter.com/math_rachel/status/1448104537273864203?s=20

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/

https://twitter.com/achang1618/status/1448469499909447683?t=GwKU44xx2NsAFkbF0OvNHg&s=19