How 'scary' ER visit led to an app that allows Indigenous patients to share stories of racism in health care
Incoming CMA president-elect and brother created the new online tool
Details that emerged during the inquest into the death of Joyce Echaquan in a Quebec hospital came as a shock — but not a surprise — to many Indigenous people in Canada, according to the incoming president-elect of the Canadian Medical Association.
"People often question whether or not your truth is valid just because you're Indigenous," said Dr. Alika Lafontaine, an anesthesiologist in Grande Prairie, Alta.
Lafontaine and his brother, Calgary dentist and software developer Dr. Kamea Lafontaine, developed the Safespace app to amplify Indigenous voices. It allows Indigenous patients to use a pseudonym to talk about racist encounters in health care.
Dr. Brian Goldman, host of White Coat, Black Art, spoke with the brothers about the personal experience in 2013 that sparked the idea for Safespace, and how they hope it will spur action on racism in Canada's health-care system.
Here is part of their conversation.
Dr. Kamea Lafontaine, you had an experience with the health-care system that had a profound effect on you. Tell me about that.
Kamea Lafontaine: I was in a lot of pain. And my wife, she rushed me to the hospital. A lot of doubts started to arise, basically, around the diagnosis itself.
The line of questioning specifically talked about assumptions around drugs and alcohol.
Luckily, my brother's a doctor. I was able to call him up. I was able to get some advocacy. And what ended up happening is that my appendix almost burst and I was rushed in for surgery to deal with it.
The fear that I felt going through that process and feeling like assumptions were being made about me, that I had to come out and really just advocate for myself … that was a scary moment for me.
Alika Lafontaine: I remember you telling me, Kamea, that the doctor had diagnosed you with kidney stones. And we started to backtrack and go through the specifics around how they came to that conclusion.
I remember … thinking to myself, man, this really doesn't sound like kidney stones. And I remember telling him, "Bro, you need to get a second opinion because this could be really dangerous."
I think I considered racialization pretty early. The questions that he was initially asked about drug and alcohol abuse — that's usually not where you start with someone who doesn't have an altered level of consciousness and doesn't have slurred speech.
Kamea's story is really a great example of how assumptions can lead to really, really dangerous situations.
We project these in a lot of different ways: racialization is just one. Sexism, ableism, all the different "-isms" are ways that we project our expectations and beliefs onto patients.
Kamea Lafontaine: That's what really triggered this whole conversation around: what's it like for the everyday patient? What's it like for Indigenous patients who don't have any credentials or connections?
And that's what ultimately led to the conversation around solutions. Approaching the problem from a different perspective. Because being in the system, you can't help but also see the other side of it, where you don't want to become the victim of everyone accusing you of these problems as well.
There needs to be some sort of place where these kinds of concerns can be aired with as little risk as possible to both the patient and the system.
Dr. Alika Lafontaine, tell me about the Safespace app.
Alika Lafontaine: We really had our minds wrapped around how do you deal with making sure that the multiple-perspective truth gets out there, but then also protect those within the system that are afraid of retaliation?
It's not just patients that are afraid. It's also other providers.
How many times do we see things go on day-to-day … [that are] not optimal patient care, sometimes even creating patient harm? But we're afraid of what will happen if we share that type of information.
We've had more than 5,000 visits to the app. And if you compare that against [the complaints] the health system is getting right now, these stories are very few and far between.
What we found through the last few months as we've gone through this project is understanding more and more that people don't trust the structures that are in place right now to collect this sort of data.
What kinds of patterns to the reports are you getting on Safespace?
Alika Lafontaine: Racism is present across health systems in B.C. I don't think that would be a surprise to many people. The intensity is different.
We are definitely finding that there are areas where racism is a much bigger issue relative to other places.
The stories that are shared focus on everything from racial slurs being used, being moved to one place versus another, segregation. There's been patterns that have been generated around being denied or restricted care.
Indigenous people are starting to add their story to what is now considered true. That's revolutionary.- Kamea Lafontaine
Sharing that these patterns are collected in a way that can be trusted is a way to spur action quicker. Because I think at the end of the day we focus so much on whether or not something's true, when in reality the question is whether or not we're going to act on what we know.
Kamea Lafontaine: Indigenous people are starting to add their story to what is now considered true. That's revolutionary.
Can we trust the stories that you're receiving if they're anonymous?
Kamea Lafontaine: A lot of the high-profile sexual assault cases that happened over the last five years, it always started with one anonymous person that came forward and claimed that something happened. Then there was five, then there was 20, and then there was 40. And magically all of the resources needed to investigate this claim appeared.
Further to that, when you think about blockchain technology that we're using for Safespace, there's actually a difference between anonymity and pseudonymity.
Our application … is pseudonymous. The user has a persistent ID on the system so that they can continue to interact with that pseudonym over time.
And there's a lot of evidence and scientific research that has shown that people will care about their pseudonymous identity and reputation just as much as they would their real life name.
There's pros and cons to complete disclosure. There's pros and cons to anonymity. We think that there is a new space that's emerged using pseudonyms.
It doesn't mean … that they won't eventually enter into the health-care system and disclose who they are. But the difference is you need pseudonymity in order for those stories to reach escape velocity.
Q&A edited for length and clarity.
Written by Rachel Sanders. Produced by Rachel Sanders, Jeff Goodes and Amina Zafar.