Have you been told you “know too much” in the doctor’s office?

An image of Kaia, an Asian woman with glasses smiling softly directly into the camera. Black text on semi-transparent yellow blocks reads, “have you ever been told you ‘know too much’ in the doctor’s office?”. Kaia is wearing a blue hospital gown, with a wooden wall behind her and a yellow sharps box, haphazardly pinned eye exam chart, and other paraphernalia on the wall. ⁣

HAVE YOU EVER BEEN TOLD YOU “KNOW TOO MUCH” IN MEDICAL APPOINTMENTS? I’ve had a few appointments end with doctors telling me that I was “too knowledgeable” and that it was evidence I was just anxious. Have you had this experience? ⁣
⁣
For me, being aware of changes in my functioning and knowledgeable about healthcare was evidence that I wasn’t receiving the care I needed. I was filling the gap that the apathetic healthcare system left. ⁣
⁣
What’s more, I was filling that gap with skills that one of my doctors taught me as a teen. He taught me how he does assessments, how to make a treatment plan, how to communicate in medical systems- when I started working in research, we talked shop. ⁣
⁣
My doctor taught me those skills so that I’d be empowered to advocate for quality care. But for many doctors, my empowerment is off-putting. My vocabulary is threatening, my confidence is unusual- and so to regain the power that I claim by being an active part of my care, they pathologize my knowledge. ⁣
⁣
It can be a very painful, and dangerous experience. It only takes one doctor with a grudge to get words like “non-compliant” or “conversion disorder” put into your records. But when someone recognizes those skills as care-seeking and not a threat to their power, you become a formidable team. ⁣
⁣
⁣

Equitable healthcare means making access to all healthcare equitable- not just “white mans medicine”

An orange background with a white border and black text. The headline reads, “Equitable healthcare means providing ALL kinds of healthcare- not just “white mans medicine.” Bullet points below say, “Some people abstain from interacting with medical systems because they cause harm. What we name as “alternative” care often just means it hasn’t yet been co-opted by white supremacy. We must fund “alternative” care through the Canada Health Act to provide equitable care for all.” And the questions below are, “Have you ever tried “alternative” care? Was it harder to access? Do you know what cultural origin that care comes from?” There is a cartoon of a white bunny with pink ears and a flower crown peeking into the frame. ⁣

It’s important to note that some people abstain from interacting with medical systems because they cause harm. We must provide alternative types of care, funded under the Canada Health Act. Especially care that supports patients in choosing their own services. ⁣
⁣
Often, what we name as “alternative” care is actually non-Western traditions of health care. It’s shameful that we only cover “white mans medicine” as I’ve heard some put it. We look down on “alternative” care while refusing to fund research on it. ⁣
⁣
BONUS: Fund all LEVELS of care. It’s ridiculous we don’t have subsidized retirement homes in Ontario, and that community (in home) care is so stingy it’s dangerous. We should be able to choose our carers- it’s a safety issue. And not all disabled folk are elderly. ⁣
⁣
⁣

How can we improve equity in healthcare systems?

In summary: Fund doctors to communicate, give patients access & some control over our health records, eliminate hierarchies of power, recognize the expertise of ALL members of health teams including patients, & fund all types of care including research.

Funding structures matter. My GP uses capitation funding: he’s paid a flat fee for having me on his service. That means he’s paid to do work outside of appointments, including communicating with my specialists. With fee-for-service, that burden fell on me. 

Electronic medical records (EMRs) help. But they can also reproduce harm if a health care provider records discriminatory findings and shares them. Patients need to be able to access, redact, and restrict their records- after all, they legally belong to us.

Healthcare fields are often also siloed by hierarchies of power. There are expectations about who can bring up issues and who can’t, with patients on the bottom and doctors on the top. How can we make change if some members of the team aren’t allowed to speak up? 

Everyone brings their own expertise to the healthcare interaction. Patients know themselves. Doctors know diagnostics. Social workers know care services. We have to change power structures in medicine to recognize that ALL of these are EQUALLY important parts.

Standardized healthcare standardizes whiteness.

A white background with yellow border and a cartoon of pills in the top corner. A bulleted list reads, “Standardization attempts to strip bias from healthcare, but it only removes our humanity.
It doesn’t keep up with real life. It is designed for white, middle class patients with one easily identified issue. It hides existing bias under the guise of objectivity. It reduces opportunity for practitioners to use their expertise, especially with complex issues.” In large italics, “Standardized healthcare standardizes whiteness.” and underlined below, “When does standardization help provide better care? When has it resulted in worse care for you?

In an attempt to reduce bias, we’ve standardized healthcare. I have beef with standardization. Standardization often shows up in flowcharts, decision trees, and formulas designed to take human decision making out of healthcare.

A. It doesn’t keep up with real life. As a service provider, I’ve had to work around formulas for subsidizing care that assume rent in Toronto tops out at $1000. Uh, no. 

B. Standardization is often designed for white, middle-class patients with one easily identified issue. It’s not designed to take people of colour, transfolk, people living in poverty, undiagnosed illness, complex illnesses, etc into account.

C. Standardization hides existing biases under the guise of objectivity. Attempts at implementing AI decision-making in healthcare only REPLICATED the bias of the programmers (Parikh, 2019 in JAMA) Thanks to @occupymath for the citation! 

D. Standardization is an attempt to eliminate bias in healthcare providers, but it also eliminates their expertise- especially in the case of complex or undiagnosed illness. We’re much better off educating ourselves on our biases and how they show up.

How can harm be reduced in healthcare?

A solid orange background with a white border, rosemary sprigs in the corners, and black text. The large text says, “We need to: recognize our biases rather than pretending they don’t exist, learn about how biases show up, include patients in medical systems of power. This requires an absolute transformation of healthcare systems.” In smaller text below, “What changes would you propose to increase equity in healthcare- and not just Western medical care?”⁣

In summary: recognize our biases rather than pretending they don’t exist, learn about how biases show up, include patient voices in medical systems of POWER. And that means not setting patient voices and expertise UNDERNEATH medical power.⁣
⁣
I’d start by including patient voices in decision making. But not lip service: service users NEED to be part of the systems of power. That means giving patients power in how changes are implemented. I’m pulling this from Ostrum’s procedural justice (2015)⁣
⁣

⁣

We need to name bias in healthcare to change it- and that starts with learning about what it can be

THE SYSTEMIC BARRIERS ARE DEEPLY INGRAINED. FALSE AND HARMFUL STEREOTYPES ARE REINFORCED IN MEDICAL EDUCATION AND MEDIA. HOW CAN THIS BE COUNTERED?⁣
⁣
We have to start by speaking openly about these biases. So often, it’s considered rude to say “medicine is racist” but we will change nothing if we can’t name it and have a conversation about bias. But that convo often turns into soothing people in power.⁣
⁣
It does no good to say “there are barriers” if we can’t name them. Medicine is not exempt from the same biases that exist in society (nor are police or social work): racism, sexism, neoliberalism, and narratives of deserving exist in medicine too.⁣
⁣
And we need to talk about what bias in healthcare looks like, because it’s rarely obvious. There’s a push not to read it as discrimination- a phenomenon @ogorchukwuu names racial gaslighting. How do you see bias acting in healthcare- including subtle bias?⁣

Doctors are still using “objective” diagnoses to dismiss patients

An orange background with black text and a cartoon of a doctor holding a file. “Doctors are still using ‘objective’ diagnoses to dismiss patients.” And below it, “Have you been inappropriately diagnosed with something as a way of dismissing your concerns? Did this have long-term negative affects on your ability to receive care?”⁣

I conducted an informal survey in a group for my illness, and women are still being “diagnosed” in droves with hysteria-by-any-other-name, “conversion disorder” and inappropriate diagnoses of anxiety.⁣
⁣
These diagnoses not only waste the appointment, but may prevent patients from receiving care in the future as subsequent practitioners see this in their record and decline to take the patient seriously. ⁣
⁣
Many people can relate to having their illness pegged as anxiety or depression: diagnostic overshadowing. This can be a major barrier to receiving care, especially among women and people with a mental health history.⁣
⁣

⁣

Medicine is not objective

An orange background with black text. Very large block text readings, “Medicine is not objective.” In small caps below it, “False objectivity maintains the status quo. Rather than pretend practitioners can be truly objective, we must recognize it’s impossible to be objective and work with that awareness instead.”⁣

It’s important to recognize that medicine is not objective. ⁣
⁣
False objectivity maintains the status quo: we must recognize it’s impossible to be truly objective and work with that edge instead, especially in healthcare where that’s a life and death issue! Barriers to healthcare are reflections of the barriers embedded in our society. ⁣
⁣
Here’s a little known fact: incarcerated folks with federal offences are excluded from the Canada Health Act, and thus have no access to “universal healthcare”.⁣
⁣
Many of us know that between 1977 and 1993, little to no research was done on ciswomen of child-bearing age with the assumption that what was good for cismen was good for ciswomen. It wasn’t until 2001 that the IOM even confirmed that sex-based research was needed. ⁣
⁣
And here’s a little known fact: incarcerated folks with federal offences are excluded from the Canada Health Act, and thus have no access to “universal healthcare” ⁣

⁣

My experiences with systemic barriers to care

A white background with black text. “Intersectionality in healthcare is often overlooked.” The block quote says, “Those seeking support are met with multiple systemic barriers and prejudices.” And below that, “What kind of barriers and prejudices have you had to deal with? How do you deal with them? How have they affected your care?” At the center top of the image is a red warning triangle with a fence pictured within it. ⁣

There are a lot of factors that influenced MY access to health care. As a young Asian woman, I wasn’t taken seriously. My symptoms aren’t measurable by existing testing. I have a mental health history. But also I had great insurance and Canadian accented English. ⁣
⁣
A lot of sick women talk about striking balance in the exam room: smart enough to take seriously, but not so smart we sound like we’ve done our own research. Which we have. Because the doc sure isn’t. Same goes for looks: you have to look sick but not depressed. ⁣
⁣
Many people can also relate to having their illness pegged as anxiety or depression: diagnostic overshadowing. This can be a major barrier to receiving care, especially among women and people with a mental health history.⁣
⁣
My “health journey” changed dramatically when I started bringing white men to appointments. It’s infuriating, but helpful to have someone the docs respect back up your story. The difference was undeniable. 9 years into illness, I was finally taken seriously. ⁣
⁣

⁣

What is intersectional healthcare?

A light orange background with black text and a diagram in the corner. “Intersectional healthcare (Kimberlé Crenshaw): how sites of oppression and privilege meet and form unique experiences that cannot be separated from each other, and how that ‘intersectionality’ affects our ability to access health care” In a pale pink box below it reads, “What factors in healthcare are affected by your intersection of oppression and privilege?” The diagram is a venn diagram with 5 intersecting circles. The yellow circle is labelled Education, the pink is labelled Race, and the grey is labelled Citizenship. The intersection between the Education and Race circles is labelled Income, and the intersection between the Citizenship and Race circles is labelled Belonging. The other circles aren’t labelled. A white arrow points towards the very center of the diagram, where all the circles intersect, labelled it Intersectional Identities. ⁣

Intersectionality is a term coined by Kimberlé Crenshaw. In short, it describes how the “intersections” of our sites of oppression and privilege are unique- e.g. I’m a pale disabled Canadian-born Filipina cis-woman- you can’t break these apart, you must consider how they interact. ⁣
⁣
When we talk about Intersectional Healthcare, we’re talking about how these sites of intersecting oppression and privilege affect our ability to access health care. We often think that ends with being able to get to the doctor, but it also includes: ⁣
⁣
Who is taken seriously at the doctor, who is dismissed, who can take time off to see the doctor, where doctors are located, citizenship status, what’s covered, private insurance, language barriers, research funding, etc. What other factors can you think of?⁣
⁣

⁣