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Patient participant

A patient advocate talks about the need to involve patients in their treatment plans and how this can help AMR.
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Everyone’s voice is important. So how do we get to a point where whatever we design for health care becomes functional for the patient? And that truly comes down to asking the patient what it is that they want, what they need. I think, actually, the word “need” is more important than the word “want.” So in my own case, in terms of MRSA, there were days that I wished that I had been more connected to my doctor to report back to him about how bad my infection was on my face at that point in time, or every day, for example. It took me months, or sometimes weeks, to get appointments between my different super-specialists.
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And in between those days, when I was living with a MRSA infection, I had no way of telling them how bad things looked. And so when different doctors were putting me on antibiotics, I thought that it was in my imagination that my infection was getting worse, or I thought that maybe the doctors knew what they were doing. So I stopped antibiotics halfway. And so this was really important. Then I’d listen to these stories and say, hang on, is there something that we can design to close the gaps? It’s not just about the health care professional that only spends 10% of the time with the patient that matters.
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It’s also about the patient that should be participating in the health care system.
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I was fed up with the system. I have multiple reasons. One was that I battled to find accessible information on the internet to help me make more informed decisions. The problem was that my doctors and the government weren’t providing it to me. When I had MRSA, I had never heard of this, and was frustrated that when I finally did learn about it, that my doctors treated me like I could never understand it, anyway. I nearly lost my face. In fact, I lost huge portions of my face because of the MRSA, and nearly my life, because of the paternalistic model of medicine we have had in the past.
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To me, once I understood MRSA, it became my life’s work to show medicine that if they gave patients the opportunity to participate equally, instead of hiding it from them the way it was hidden from me, they might be surprised at how much more patients can do. So the other ultimate reason I was empowered in the end was because a doctor in the States, working on cases like mine, could give me a treatment plan. And that was really important, because I couldn’t figure out which direction I had to go in. And eventually, I found this doctor in the States that could give me that.
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And I realised that, and he told me, you only need two surgeries hich is so important to me, because I had been through that MRSA infection, and I couldn’t afford more mistakes.
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So this is a big problem. Doctors don’t work together. And often, I think patients are left in the middle of the system where they don’t really know which way to turn. There’s no direction for them. They go to one super-specialist and they think, ok, whatever the super-specialist tells them right now is real. It’s what they need to do. And then there might be medical errors. And then they don’t know where to go after that. And there’s never really any accountability. So this was frustrating for me, and that’s one of the reasons I started advocating, because of what was happening to me. MRSA for me wasn’t something that stayed in the hospital.
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It was something that I lived with for over a year. It was something that I had to manage 24/7. Whilst my doctors spent only roughly 10% of their time trying to resolve it. So I just spoke at the ICPIC about a meeting about this– we talk about hospital-acquired infections, and how you know there’s a lot of antibiotic stewardship going on in the hospitals about this. But the patient needs to be included in it, because we, me, the patient left the hospital, went out those doors, I needed to understand how to manage this. I needed to understand how to manage my MRSA infection. So there were a lot of things that were never taught to me.
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For example, that I could pass it on to my kids when I was looking after them, or friends or family. How to sterilise my counter at home. How do you sterilise my hands. Self-taught for me was carrying things like alcohol sprays, alcohol rubs, sanitizers. Self-taught, again, was changing eye pads on my face. I probably went through two to three eye pads a day. So you can imagine, when I speak at conferences, I always say the human side of it, when I start crying when my doctor tells me your surgery has been a failure again, I go home and I start changing my eye pads. Because I’m like, please don’t cry, please don’t cry.
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Because you have this massive MRSA infection that you have. So these were things that were never taught to me during hospital stays. Things as well, like take your artificial eye out. Because if you don’t, it’s another foreign object. If you don’t take it out, it’s aggravating infection even worse. Nurses weren’t telling me that. My GPs weren’t telling me that. My plastic surgeon wasn’t telling me that. My maxillofacial surgeon wasn’t telling me that. It was only my ophthalmologist and my ocularist that were telling me this. Take your artificial eye out, because it’s another foreign object. And you know what? Your face is going to heal better if you take it out so.
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So going back again to one of the other things I advocate about is multidisciplinary teams. What does that mean? Going to my pharmacist and asking them, now that I’ve just been over a massive MRSA infection, can I come to you and can I ask you about how vancomycin works? Because it’s what I was put on to after the infection in the head. The doctor didn’t want to give me a lot of information. He was busy. He had 15 minutes to see me. So these are important contact points for us. And I think that it’s a very, very important part of our health system. So education for patients is a whole system. And so this is why I started my advocacy.
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First of all, learning from the professionals. So what’s really been helpful for me is to sit inside of conferences. One of the important things I’ve had was to be able to ask some of you some questions– some people some questions my groups, in my circles and my networks. Although sometimes, it does become a little bit complex. And so this is also something I’ve added into advocacy. You can’t just go out there and say, this is antimicrobial resistance. This is what it is, and spit it out to people. You have to be very careful how people understand what you’re talking about.
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I think that when researchers start working with patients, they need to understand that there are certain limitations that they need to respect, and they need to work with, and they need to accommodate is the right word, accommodate these certain limitations.

In this video, a patient advocate answers the following questions:

  • Why is a patient’s perspective important?

  • What led you to become a patient advocate?

  • What can be done to involve patients and the public in AMR research?

She specifically mentions how important it is to involve the patient in the treatment and inform them of how to manage their condition at home, as well as in the hospital.

The need to find the balance between not talking to the patient as if they could never understand the science behind the condition, but also using un-complicated language, and being accommodating for the limitations in a patient’s knowledge, is also highlighted.

In the comments below please let us know:

  • Did anything in the video surprise you?
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Tackling Antimicrobial Resistance: A Social Science Approach

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