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Is there a common term for... patients' institutional literacy within healthcare?
Like: knowing how referrals work, what specialists handle what, just knowing what to expect and how you're "supposed to" engage with the system?
Like: knowing how referrals work, what specialists handle what, just knowing what to expect and how you're "supposed to" engage with the system?
This whole thing is a huge source of privilege within care, though of course it intersects predictably with other axes.
It was extremely opaque to me for a long time how to get referred to specialists. Then I interviewed a lot of people and now I'm seeing a geneticist?
It was extremely opaque to me for a long time how to get referred to specialists. Then I interviewed a lot of people and now I'm seeing a geneticist?
With the enormous caveat that no advice is good advice for everyone (see embedded thread), it matters what a doctor thinks you're asking for and you can impact that.
If you list your symptoms and hope they'll know what to do, they probably won't. https://twitter.com/bennessb/status/1235937389568286721?s=20
If you list your symptoms and hope they'll know what to do, they probably won't. https://twitter.com/bennessb/status/1235937389568286721?s=20
If you're suddenly in a lot of pain and you go to a doctor and describe that pain and then wait for them to weigh in with their expertise (which is how I thought doctor's appointments worked), a lot of doctors will never ask you what your goals are.
They will guess.
They will guess.
And then they will take that guess as truth and respond accordingly.
Probably, the guess will be based on their past experience. It's a habit developed to get through a bajillion quick appts.
And at first, you might not see The Guess happening.
Probably, the guess will be based on their past experience. It's a habit developed to get through a bajillion quick appts.
And at first, you might not see The Guess happening.
Here's what that looks like:
Me: I woke up this morning with excruciating pain in my shoulder!
Doc 1: I recommend ice & anti-inflammatories
Doc 2: I recommend an xray
Do you see what happened there? Doc 1 assumed I want pain relief & Doc 2 assumed I want to find the cause.
Me: I woke up this morning with excruciating pain in my shoulder!
Doc 1: I recommend ice & anti-inflammatories
Doc 2: I recommend an xray
Do you see what happened there? Doc 1 assumed I want pain relief & Doc 2 assumed I want to find the cause.
And it seems so obvious to me now. Maybe it was always obvious to you.
Telling doctors my goals does not guarantee that they will help me pursue those goals, but it interferes with the guessing process and that has changed the conversations I have with doctors.
Telling doctors my goals does not guarantee that they will help me pursue those goals, but it interferes with the guessing process and that has changed the conversations I have with doctors.
This is just a small example of what I'm talking about, but I feel like there's an inflection point when you've had enough lived experience navigating healthcare that popular media is no longer your main point of reference for what a certain type of appointment should look like.
