Read on Twitter
Let's talk about the advice we give patients about interacting with doctors.
You know "become your own best advocate" stuff.
Or more importantly, let's talk about the many ways this advice breaks down.
1/
You know "become your own best advocate" stuff.
Or more importantly, let's talk about the many ways this advice breaks down.
1/
First off, there is no right way to talk to doctors because of course every doctor is different. And most doctors are working within a conveyer belt system where they're trying to tune in to a different patient's needs every 15-20 minutes. Brain ouch.
2/
2/
So under the best possible circumstances, a great doctor must consciously counteract their internal biases every 15-20 minutes if they want to really hear each patient.
(We all have to do this in lots of situations, it is not unique to doctors. but it's important here.)
3/
(We all have to do this in lots of situations, it is not unique to doctors. but it's important here.)
3/
In our current system, even if every doctor was great at this, it wouldn't work all the time.
Most patients with chronic conditions experience undeniably biased care all the time. This tracks along social location in many different ways and there's lots of emerging research.
4/
Most patients with chronic conditions experience undeniably biased care all the time. This tracks along social location in many different ways and there's lots of emerging research.
4/
But another way this breaks down seems to fall along lines of *how* you got your knowledge.
There is a huge amount of systemic gatekeeping around who is encouraged to use medical language and who is treated like a paranoid interloper who is out of their lane.
5/
There is a huge amount of systemic gatekeeping around who is encouraged to use medical language and who is treated like a paranoid interloper who is out of their lane.
5/
Many patients with science/research/healthcare backgrounds will learn to introduce themselves to docs that way.
If you say "I read this research paper about my condition" then unfortunately, many docs will say "stop using Dr. Google."
6/
If you say "I read this research paper about my condition" then unfortunately, many docs will say "stop using Dr. Google."
6/
As a culture, we have this idea that the only people who do non-professional research about health are people who want to use that research in bad faith.
To fake an illness for... some reason. (the reason doesn't matter here.) Or because you're paranoid?
7/
To fake an illness for... some reason. (the reason doesn't matter here.) Or because you're paranoid?
7/
So to combat this bias, some patients will lead with their professional credibility, even if it is NOT AT ALL RELEVANT to the research paper they want to discuss.
Relevance doesn't matter. What matters is demonstrating that you weren't researching in bad faith.
8/
Relevance doesn't matter. What matters is demonstrating that you weren't researching in bad faith.
8/
And so if you don't have a way to demonstrate your good faith (formal education, work experience, parent who works in healthcare, etc), then you are relying on your doctor to trust your good faith.
And... we're right back to social location. Privilege = presumed good faith.
9/
And... we're right back to social location. Privilege = presumed good faith.
9/
So what do you do if your doctors dismiss your efforts as bad faith research?
A lot of people lie. A lot of people show up to appointments and ask non-threatening pointed questions to gently guide their doctors in their direction of inquiry.
10/
A lot of people lie. A lot of people show up to appointments and ask non-threatening pointed questions to gently guide their doctors in their direction of inquiry.
10/
This sucks. It's ridiculous. It wastes doctor & patient time, it's still often ineffective, and it maintains the pretense that there are good & bad faith researchers to begin with.
Oh, and it is unfortunately very very necessary. Patients who do this are not the problem.
11/
Oh, and it is unfortunately very very necessary. Patients who do this are not the problem.
11/
Lately I've been thinking a lot about the scene in When Harry Met Sally about faking orgasms. Because doctors don't think they're dismissing good faith research attempts. Of course they don't!
But most patients are doing research and lots of them are lying about it so...
12/
But most patients are doing research and lots of them are lying about it so...
12/
I'm sorry if this analogy doesn't work for you, but I'm stuck in it.
Because there is a power structure where the person lying is often doing it for their own safety.
Don't tell somebody to stop lying without first guaranteeing their safety.
13/
Because there is a power structure where the person lying is often doing it for their own safety.
Don't tell somebody to stop lying without first guaranteeing their safety.
13/
I... thought after I sent the first tweets I'd think of a conclusion but I don't really have one.
Empowering patients with information is good.
But telling patients to become better advocates with their doctors is not universally good advice. This problem is systemic.
14/14
Empowering patients with information is good.
But telling patients to become better advocates with their doctors is not universally good advice. This problem is systemic.
14/14
