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RIP Patient Engagement

My son had his second COVID shot yesterday. I know that I am supposed to be thankful for every crumb thrown to my disabled child. I am expected to be eternally grateful to the government if he is able to access essential health services like vaccines. I'm so done with that.

I am appreciative of the scientists who created the COVID vaccine and the staff at the vaccine clinic. But the government is just doing the job they are supposed to do, which is roll-out the vaccines in an equitable way to the public. We had to fight like hell for Aaron and his community to be prioritized for their first shot. I'm not giving the government a medal or an honorary degree because he got the second one.

The experience at the vaccine clinic was okay. I am a secret shopper in every health setting I walk into. Dismantling the patient experience is my thing. For this I've been called a whiner, a victim, a complainer - but the truth is that health care can always improve, even if the powers that be don't want to hear constructive feedback.

The way to better? Working with patients and caregivers right from the beginning to design and roll-out health services like vaccine clinics. Alas, patient engagement has been thrown out the window during this pandemic.

Do I have proof of this? No, because patient engagement was never measured or counted properly, even before the pandemic. What isn't counted doesn't count. I only have my own experience as Aaron's caregiver yesterday to draw upon.

In Canada, we are taught to be well-behaved patients, to be satisfied with good enough. The vaccine clinic experience was good enough, but it could have been so much better.

What I wonder is if the patient experience was better, maybe the clinic would be more welcoming and accessible to more people? Maybe folks would return for their second shot if the first experience was pleasant?

The nurses, clerks and wayfinders at the clinic were fine. Chatty with Aaron. Told him what was happening. Talked to him directly, not me. That's all good stuff.

But the rules! The signs! The signs seemed particularly obsessed with us not taking selfies. There were security guards everywhere. This is such a deterrent for people who struggle with trust in the health system - ironically, this is often the people who need the vaccine the most.

We had to take off our own masks to put on their flimsy disposable one. I asked if we could put their mask over our masks. I was told, 'No.' Fine, I said, sighing. I know you have your rules.

The vaccine was uneventful, although there was some confusion about Aaron's age and who could vaccinate him (a student nurse could not). I started to panic he'd be denied his shot. (This is what the 'system' does to me - it makes me fearful and paranoid). He was shuffled to a more experienced nurse and I breathed a sigh of relief when the needle went in.

The waiting area afterwards was ridiculous. Chairs crammed together, separated by tiny sheets of plexiglass. News flash: COVID is airborne folks, but the plexiglass manufacturers are making out like bandits this pandemic. Aaron had to wait 15 minutes, but there was nowhere for support people like me to sit. There was an empty chair beside him, but I wasn't allowed to sit down. I had to cram into the space beside him, standing above the plexiglass 'barriers,' waiting for his 15 minutes to be up. The waiting area was packed with people.

It was a long 15 minutes, standing there, sweating, trying not to breathe. On the way out there was a selfie station where we allowed to take a photo in the controlled setting. One of the backgrounds for the selfies was a picture of a cruise ship. This was in pretty poor taste considering how many people died on cruise ships at the beginning of the pandemic.

I wonder if the people planning this vaccine clinic realize how traumatized the public is from this pandemic. It seems like trauma-informed care principles could be applied here.

This is all minor stuff. As I've written about before, all these minor indignities in health care pile up and up and then you suddenly you have death by a thousand cuts.

The antidote is to work together with the people you are caring for to design spaces and processes. Patients would point out that it is silly not to allow us to double-mask. Ask why we can't take pictures to celebrate our vaccines if we make sure nobody else in the photo is identifiable. Wonder if there could be places for caregivers to sit beside their loved ones in the waiting area. Question whether the plexiglass is just pandemic theatre and suggest people could wait outside instead. Point out that another selfie background could be chosen instead of a cruise ship. Also, while I'm at it (not like anybody has asked): why do we have to go mass vaccinations clinics anyhow? Why can't we go to our family doctors for our shots?

I'm not looking for hotel service. I wish that vaccine clinics were planned in partnership with patients. But this seems too much to ask for now.

If patient partnership was the first thing thrown out the window during the pandemic, it clearly wasn't that strong to begin with. RIP Patient Engagement. Now that it is torn down, maybe this is the opportunity to build something new, This time with patients, in a meaningful way that will actually stick? I promise we can help you be better, we really can. But only if we truly do it together this time.

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Allison Sivak
Allison Sivak
Jun 13, 2021

I think you are not noting the speed with which this has all been organized. A year ago, we had no vaccine available to us. I didn’t have any sense that there would be one for another two years, at least. The speed with which vaccines have been made available to Canadians in a new situation, under many other pressures, is remarkable. It seems you’re tunneling in on things to be upset about, rather than considering the incredible privilege to which Canadians are privy.

Marc Burnstein
Marc Burnstein
Dec 07, 2021
Replying to

I understand your point regarding how remarkable and thankful we should be for the speed at which the vaccine was developed, but I don't see the message here as "tunnel vision" or simply complaining - I see the message as pointing out there is much room for improvement. Or perhaps, a "call" for the improvement of our system and practice of healthcare. The message is not one of disregard, it is a call for the need to focus on the human connection and to dive into deeper conversations and partnerships with the patient.

The call for patient partnership goes far beyond Covid. We must begin to ask our patients, "How are we doing?" What can we do better? We must…

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