Taking care of your heart

This week on Health Matters, guest host Kelly Albert speaks with Wendy Wray about heart health tips you should know. Hugo Perrin shares what it is like to live with the heart condition tachycardia. Dr. Nader Sadeghi describes his research which hopes to pioneer a new method of treating HPV-related throat cancer. And, learn about a new committee designed to help patients,their families and caregivers navigate the health care system while receiving treatment at the MUHC. 

Cette semaine à Questions de santé, l’animatrice invitée Kelly Albert discute avec Wendy Wray de conseils importants sur la santé cardiaque. Hugo Perrin partage son vécu de personne atteinte de tachycardie. Le Dr Nader Sadeghi décrit ses recherches visant à mettre au point une nouvelle méthode pour traiter le cancer de la gorge associé au VPH. Et découvrez un nouveau comité conçu pour aider les patients, leur famille et les proches aidants à s’y retrouver dans le système de soins de santé lorsqu’ils reçoivent des traitements au CUSM.

Transcript

Kelly Albert: 0:00

Hi there. Thank you for joining us. Tarah Schwartz is off this week. I'm Kelly Albert. And this is Health Matters on CJAD 800. On today's show, the McGill University Health Center is leading the world on a new way to treat throat cancer. Later in the show, we speak with the researcher who is pioneering this new, less invasive treatment. And, learn about a new committee designed to help patients and their families and caregivers while receiving treatment at the MUHC. To begin today, February is Heart Health Month, a time to bring awareness to the importance of cardiovascular health and what we can do to reduce our risk of cardiovascular disease. Heart disease is the leading cause of premature death in women. About one in three Canadian women will die from heart disease. The Women's Healthy Heart Initiative's mission is to increase awareness, prevent and treat heart disease. Wendy Wray is a cardiac nurse and the founder of the Women's Healthy Heart Initiative at the MUHC. Wendy, thank you so much for joining us.

Nurse Wendy Wray: 0:53

Thank you for having me, Kelly.

Kelly Albert: 0:54

So February is Heart Health Month. But I feel like there are still some misconceptions that persist when it comes to heart disease. Do you feel that's true?

Nurse Wendy Wray: 1:03

I feel that very true, especially when it comes to women. Unfortunately, it still is believed that heart disease is a man's disease. Whereas, we know and have known for a while now that it's not. It's a women's disease as well.

Kelly Albert: 1:19

Particularly, because it is the leading cause of death in women. We hear about breast cancer. We think of the different types of cancer that affect women. But this is really the one that we should be focused on.

Nurse Wendy Wray: 1:32

Absolutely. I don't think we hear enough about women and heart disease. We know that even in 2023, women are under-aware of their heart disease risk. They are under-diagnosed, undertreated, and under-researched. And I think now is the time that this should change. It needs to change and that's why we need to talk more about it.

Kelly Albert: 1:55

In conversation with Wendy Wray, a cardiac nurse and the founder of the Women's Healthy Heart Initiative at the MUHC. Now we've spoken about the Women's Healthy Heart Initiative before on the show. But let's remind our listeners for those who may not know, what is the WHHI.

Nurse Wendy Wray: 2:11

The Women's Healthy Heart Initiative, we opened in 2009. And the reason we developed this project was to increase the awareness of women's risk of heart disease; as well as, empowering women to improve their heart health. Heart disease is 80% preventable, usually through a healthier lifestyle. And so as you can imagine, if we get women to be aware of their heart disease risk, take better care of themselves from a heart health perspective, we can delay heart disease down the road.

Kelly Albert: 2:47

I think that's a key number that you just mentioned. 80% preventable. And you mentioned lifestyle changes and things like that. So if you can prevent heart disease from 80%, how come we don't know more about that? Like, why are we screaming this from the rooftops? I mean, you are but...

Nurse Wendy Wray: 3:06

But I'm only one voice. And that's why speaking with you like this and reaching your listeners. It's so important, because that's a very good question. I don't know why we cannot get a light shone on this issue that is so preventable. As late as 2017 in North America, we have seen an uptick in heart disease in young women. And this to me is incredible that this could even possibly be happening. Because we are 'have' countries. We are wealthy countries. And so why is it that we're actually seeing an uptick rather than a decrease in heart disease in women? It makes no sense to me.

Kelly Albert: 3:53

In conversation with Wendy Wray, a cardiac nurse and the founder of the Women's Healthy Heart Initiative, you mentioned that we're seeing an uptick. And you mentioned that women are still under-researched, under-treated for heart disease. So what are some things that anyone but particularly women should know?

Nurse Wendy Wray: 4:13

First of all, heart disease should be on their radar. Because certainly from a woman's perspective, being a woman myself, breast cancer, uterine cancer, cervical cancer is on my mind, but I'm more likely to have heart disease. So I think that we need to change our priority list when it comes to health. And if our health care providers are not giving us the information, or prioritizing it for us, we need to advocate for ourselves. We need to ask- is my blood pressure okay? Is my is my sugar okay? Am I going to become diabetic? What is my cholesterol? My body mass index, am I too heavy? Am I doing regular physical activity? These things are all modifiable, these things are all changeable. And so as women, this is what we need to do for ourselves.

Kelly Albert: 5:09

And I think you bring up a good point too, that often we women don't think to advocate for themselves. They don't think to push a little bit further if someone says; it's fine. Or you say that yourself about your symptoms, Oh, it's nothing. I'm really tired. I am very stressed right now. So what are some things that we should connect with if we're feeling things in our body that are different that we're trying to

Nurse Wendy Wray: 5:33

I think the first thing is number one to dismiss? have heart disease on our radar. The second thing is when it comes to symptoms of having a heart attack, or symptoms of heart disease, if we have it on our radar, we'll be more likely to think about it. We're great triagers as women because we're often caregivers, nurturers and so we're used to triaging for our families, our colleagues, our partners, etc. When it comes to heart disease, you cannot decide at home if you're having a heart attack or not. Why? Because we need three things when you come to the hospital to decide if you're having a heart attack. Number one, we need to hear the description of your symptoms. Number two, we need a blood test. And number three, we need a cardiogram. So clearly you can't do that at home. Women have to feel comfortable coming in with this discomfort in their chest, they might be feeling. A burning, heaviness, tightness, pressure, or squeezing, a general feeling of being unwell, short of breath, a bit more sweaty than normal. If it's not a heart attack, and they do get sent home, that's a good day. But if they are one of the 15%, who come into the emergency room, having chest discomfort, who are having a heart attack, it could be the luckiest day of their life. Because heart attacks kill.

Kelly Albert: 7:02

Absolutely. And I think one of the things that I love that you say all the time is, no one is going to get mad at you for going to the hospital if you're think you're having a heart attack. If you think you're having a heart attack, you've made the right decision, you've gone to the right place. So I think that's so important to remember that if you think you're having a heart attack, go to the hospital, even if you're not.

Nurse Wendy Wray: 7:23

Absolutely, because as you pointed out, you can't decide at home anyway and we understand that. So I think it's very important. The other thing is, tell them when you are in the emergency room, tell them why you're there. Say I'm feeling unwell. I have this chest discomfort. I'm afraid I'm having a heart attack. Because a lot of women tell me they won't go to the emergency room because they're afraid they're going to sit there for 12 or 14 hours. If you make clear why you were there, you will get timely care. But be sure to share with them the reason that you're there. I think that's really important as well.

Kelly Albert: 8:08

Wendy Wray is a cardiac nurse and the founder of the Women's Healthy Heart Initiative. We have a few moments left Wendy and I would really love to talk about February 13 and a special presentation that you're doing for Wear Red Day, can you tell me about it?

Nurse Wendy Wray: 8:22

Actually we should be really proud because we started Wear Red Day here in Montreal in 2010. And it's exploded nationally through the Canadian Women's Heart Health Alliance. So yearly, on February 13, this year it is this coming Monday. We encourage women to wear red and men as well, to support women and heart disease. At the MUHC, at six o'clock in the evening in the Research Institute amphitheater. Dr. George Thanassoulis, one of our cardiologists, will be speaking about prevention of heart disease in women. It's not just cholesterol. And I will speak a little bit after about signs and symptoms of heart disease or having a heart attack. It's open to the public. It's free and we welcome everybody to attend.

Kelly Albert: 9:15

It's an amazing opportunity to take your health into your own hands and to advocate for yourself and to know what you should look out for. And Wendy, I'm so grateful that you're doing this for our listeners and for everyone who wants to learn a little bit more about their heart health. Thank you so much for your time today.

Nurse Wendy Wray: 9:34

Thank you very much for having me, Kelly.

Kelly Albert: 9:36

That's Wendy Wray, a cardiac nurse and the founder of the Women's Healthy Heart Initiative at the MUHC. If you would like to know more about the WHHI, you can go to M UHCFoundation.com Next up on Health Matters, he knows firsthand what it's like to live with an irregular heartbeat, and he's lending his voice to ensure the experts of the MUHC have what they need to fix it. Tarah Schwartz is off this week. I'm Kelly Albert. Welcome back to Health Matters on CJAD 800. This past holiday season, the MUHC Foundation, fundraised to purchase cutting-edge equipment for the Electrophysiology lab at the MUHC, this area of expertise deals with the electrical system of the heart. So if your heart is beating too fast or too slow, in both of these cases, it can cause serious problems. And we wanted to hear from a patient who has experienced this and knows exactly how helpful the EP lab at the Glen site can be. Hugo Perrin's life changed completely on his 18th birthday when his heart started racing out of control. Hugo is a cardiac patient who is being treated at the MUHC and he joins me now. Hi, Hugo, thank you so much for being here.

Hugo Perrin: 10:42

Hey, thanks for the invite.

Kelly Albert: 10:44

You have a very incredible story. It was the night of your 18th birthday. You were out celebrating with friends. And then all of a sudden, your heart started racing out of control. Can you tell us a little bit about what happened that night?

Hugo Perrin: 10:58

Yeah, what a night. I was with friends partying, like you mentioned. And I don't remember, I think it was around midnight, my heart started racing like crazy. I was really, really scared. But at first I was like, maybe it's because for the first time I was drinking alcohol and that was a side effect of it. After an hour, I started feeling dizzy and everything. So I asked my girlfriend at time and she said, Look, just lay there for a couple of minutes, it's going to go better. And 30 minutes later, the ambulance came in. I had to go to the emergency and they had to stop my heart and restart it. Just in order to make sure that the arrhythmia stop, and I was diagnosed with supraventricular tachycardia. That's what happened on my 18th birthday.

Kelly Albert: 12:00

You sort of described what it's like to have a tachycardia that was the first time you experienced it, but what is it like to live with it? It's been, I guess about 10 years since this happened to you?

Hugo Perrin: 12:11

Yeah.

Kelly Albert: 12:12

So what is it like to have attacks of tachycardia?

Hugo Perrin: 12:17

Basically, it's just that your heart goes really fast for a certain amount of time. At the time, if I wouldn't take my medication, it wouldn't stop or it would take five hours. It was kind of scary. And when I was diagnosed with this arrhythmia, I remember that when I used to play hockey, I thought that I was really performing and I was giving a lot of energy on the ice. But finally I realized that it was tachycardia. So I had a couple of examples in my head of previous times it happened to me. But it's really your heart is going really fast. Like if you're sprinting, but you're looking at your computer or your cell phone. So that's a weird feeling.

Kelly Albert: 13:01

Yeah, that is a weird feeling. Because you're sitting, you're resting, you're not doing anything, and then all of a sudden your heart starts to race. That must be really frightening when that happens.

Hugo Perrin: 13:11

Yeah. And I heard that a couple of people, it's a bit different than me. For me, it's more when I bend over, or I jump sometimes it can start like that. And some people is just there doing nothing and it starts out of nowhere. So it really depends on people. To me, it's more positional.

Kelly Albert: 13:29

We're speaking with Hugo Perrin, who is a cardiology patient at the MUHC. You must have thought when this was happening, that you're too young to be having heart issues. You were 18 when this happened, you're still quite young. Like, how difficult is it to wrap your brain around that this is happening to you?

Hugo Perrin: 13:50

Great question. Honestly, with the support I had with the older professionals at the hospital, it was not a big deal to me. Really, because my cardiologist explaining everything. He took the time to really explain what the condition was. And I realized that first of all, it was not life-threatening so that was really comforting. And second of all, he explained to me the kind of the roadmap that we have to follow to go through it. So what was the medication, the procedure that I would have to go through eventually, and it was really comforting. So of course, I told myself that it was kind of weird that that 18-years-old was a cardiac patient at the MUHC. However, with their support and everything; I felt really okay about it.

Kelly Albert: 14:48

That's wonderful. You mentioned your care team that you're under Dr. Essebag. Dr. Vidal Essebag who's a wonderful electrophysiologist and the head of the electrophysiology department at the MUHC. So what is it like to be his patient you alluded to feeling very comforted by him. But what is he like as a doctor?

Hugo Perrin: 15:07

He's amazing. I have to say. He was my first doctor in all my life. Honestly, this guy is just amazing. During the surgery, you're wide awake during a surgery; you're awake. It's important because sometimes after asking questions and stuff like that. I remember the first time; it was kind of scary my first surgery. And we were talking about hockey. Literally, we're talking about the Montreal Canadiens. And he was playing in my heart, that was kind of crazy. But you have to understand the character. That's Dr. Essebag, he is really professional. He's thoughtful. Like I told you, he took the time with me to explain everything. So the honestly, I have nothing bad to say about this guy. He's really amazing guy.

Kelly Albert: 15:54

He's a very warm doctor. And I was very lucky enough to see a procedure at the MUHC. Sometimes, they let us watch a procedure to see what that's like. And it's sort of fascinating how minimal it is. There are just like a few little holes in the body, not even very big holes. And everything is done with these tiny little arms and scopes and things. And so it must be so surreal to know that there's something going on in your body, but it's tiny.

Hugo Perrin: 16:24

And it's not even just in your body in your heart, right. He's taking control of your heart. And you're talking to the surgeon and everything. Honestly, it was unreal the first time. Because I had three procedures and the first time I did it; honestly, I couldn't believe it.

Kelly Albert: 16:41

In conversation with Hugo Perrin, a cardiology patient at the MUHC. So how is your health now? Are you doing okay? Are there things that you always have to be mindful of now as you go forward?

Hugo Perrin: 16:56

Right now it's okay. After the first surgery, it was I was really, really lucky to be able to not have arrhythmias anymore. It lasted I think, two years. After that it started to come back and apparently that's normal. Dr. Essebag told me that when the heart grows and everything, sometimes it happens that it can come back. So I had to undergo another procedure. So same thing for two-three years, it was okay. And then it came back and I had another one the last time and since then, I'm doing really good. So it's always on and off that's a problem. Sometimes, like he told me, normally it goes up for the first time. But right now, for some reason, my heart, I think it likes to have arrhythmias. So once in a while, it comes back. But it's not a big deal. When it comes back, I just take a pill and it's a lot better. So it's not life threatening, like I told you.

Kelly Albert: 18:01

Good, you can keep it under control. And one of the things that I really admire about you, Hugo is you've gone through this experience, you've lived with this condition for 10 or so years. And you are really so grateful for the care that you've received from Dr. Essebag, that you're telling your story, you're lending your voice to the MUHC Foundation to help fundraise for this EP lab. Why is it important for you to help other patients who might be experiencing this get the same care that you received?

Hugo Perrin: 18:32

Because I think mostly, it's life-changing. Having an arrhythmia can be really scary. I have to be honest. The first time you have them, it's not a nice feeling. And the surgery, the procedure is, like you said really minimalist. Since it's noninvasive, I think it takes an hour and a half, something like that. And the next day, you're out of the hospital. I wanted to be able- since there's a shortage of the EP labs right now- I wanted to be able to help others have the same access to those EP labs that I had a couple of years ago. So to me, it's really important because it basically changed your life. You start from adding a problem to not having one.

Kelly Albert: 19:26

It's amazing. I'm so glad to hear that you're doing well. Hugo, thank you so much for sharing your story with us on Health Matters.

Hugo Perrin: 19:34

Thanks for the opportunity. And anytime I'm here for you guys.

Kelly Albert: 19:37

That is Hugo Perrin. He is a cardiology patient at the MUHC. Coming up on Health Matters how the MUHC is leading the world in a specialized way to treat throat cancer. Tarah Schwartz is off this week. I'm Kelly Albert and this is Health Matters on CJAD 800. Last week, you heard us speak about World Cancer Day and six patient advocates that we had sharing their stories as ambassadors for the wonderful care that they received at the MUHC. Now we're still tallying up the totals for what we fundraise for World Cancer Day. But until then, we wanted to share with you the story of one of the doctors who is supporting two of our cancer patients with throat cancer. Dr. Nader Sadeghi is the Director of the McGill Head and Neck Cancer Program and the Chair of the department of Head and Neck Surgery at the MUHC. He joins me now because the me he is actually pioneering a new way of treating throat cancer. Thank you so much for joining me, Dr. Sadeghi.

Dr. Nader Sadeghi: 20:33

You're welcome. Thank you.

Kelly Albert: 20:34

So I said throat cancer, I said head and neck cancers, but what are some of the cancers that you treat as a head and neck surgeon?

Dr. Nader Sadeghi: 20:42

We treated all the cancers of the upper aero-digestive tract that means the oral cavity, the mouth, the tongue, the tonsils, the voice box, the back of the throat. And in addition, we also treat cancers of the salivary glands, which are located in the head neck region. And as well as thyroid cancer and skin cancer that developed from the skin on the exposed parts of the neck and the and in the face.

Kelly Albert: 21:07

Those are a lot of different areas that you take care of. And, we spoke briefly about head and neck cancers last week on the show, but I think it's worth bringing up again that that you're actually pioneering a new way of treating these throat cancers. It's called NECTORS-2; can you tell me a little bit about what this means?

Dr. Nader Sadeghi: 21:26

This is a treatment for a HPV- Human Papilloma Virus related cancers of the throat, which is called the otolaryngology. That's the back of the throat, it's essentially meaning the tonsils and the back of the tongue, we call that base of tongue. These cancers in the last 20-25 years has actually increased in incidence. And it's also related to the exposure to the human papilloma virus and not necessarily related to smoking, or tobacco or alcohol. This is a different kinds of cancer and these cancers, patients do better. So we're trying to develop ways of treating them as successfully as before, and if not more successful. But also minimize the side effects of the treatments that sometimes patients may have after that. So in general, we use a combination of surgery, chemotherapy and/ or radiation therapy to treat these cancers and often when they come because tumors are relatively advanced, we need to give two types of treatments. Typical treatment has been for many years to give chemotherapy with radiation. In the last 15 years, it is changing now and we treat these cancers with transoral robotic surgery which we can go through the mouth and through a minimally-invasive approach remove the cancer from the throat. And separately from the neck, we will remove the lymph glands of the neck that are involved by the cancer. So this now has become a very common way of treating these patients. But when we do that, often patients are required to have radiation therapy afterwards. And this combination, we believe that whether we combine radiation with surgery or radiation and chemotherapy causes the chronic effects of radiation- dry mouth, scarring in the throat and muscles of the throat, dental health issues, and even potentially some swallowing issues to some degree. So what do we have done, we actually treat these patients first with upfront chemotherapy because that new adjuvant chemotherapy that means we give chemotherapy first. What it does is it shrinks down the tumor both in the throat as well as in the lymph glands of the neck, we call that downstaging of the tumor, and then they go do transoral robotic surgery. It becomes much less invasive, minimally-invasive to remove the primary tumor. And then we also do what we call a selective neck dissection to remove the lymph glands from the neck. Now what it does, this allows us to actually avoid adding radiation therapy afterwards and that prevents all the side effects that comes from radiation including the salivary glands not working; therefore, the mouth is dry. The dental health can be significant affected. And essentially there's no collateral injury to the other organs in the mouth and the throat. And the purpose of that is to really improve the quality of life. So, patients can have a normal diet, taste food, not have a dry mouth and be able to swallow whatever food they want to eat. And also be able to enjoy it and social setting right so this is what we have developed. Now this, again, is a combination that is different because internationally, this combination is not used as a treatment for throat cancer. So this combination we believe actually gives you better results and other combinations of treatment. So that's what NECTORS-2 is. Neoadjuvant Chemotherapy and Transoral Robotic Surgery for Oropharyngeal Cancer 2. And this is how we treat the HPV Human Papilloma Virus related cancers of the throat.

Kelly Albert: 24:50

We're in conversation with Dr. Nader Sadeghi the chair of the Head and Neck Surgery Department at the MUHC. I think that's really an interesting fact that you just pointed out that it improves quality of life of patients. Because the throat is such a delicate area, you mentioned that you swallow, you eat, you speak. All of that area can be impacted by any sort of cancer treatment. So, the fact that it's less invasive is probably a really big advance that has been made in the last couple of years.

Dr. Nader Sadeghi: 25:21

We believe it is a big advance. And we also

Kelly Albert: 25:21

I'm curious, Dr. Sadeghi, how common is that HPV have been very closely monitoring our patients. In at least the last seventy patients that we have, patient reported quality of life surveys that we do on our patients, on a sequential basis. From pretreatment all the way up to two years. We just looked at it recently, on the 70 patients that we gave these surveys to, they gave us basically a measure of various factors affecting their quality of life. Of course, initially during treatment, the quality of life does go down, that's expected from the acute side effects of treatment. But within three to six months, patients are actually going back to baseline level, that means we are not deteriorating their quality of life from our treatment. And that level actually stays like that going forward up to two years after we have been following. This is actually a significant change, because all the other combination of treatment actually does deteriorate quality of life, and it remains at a lower level than what the patients came with. What we want to do is maintain what they came with and not deteriorate from our treatment. positive throat cancer? Is that something that's on the increase? Is it something that we should pay attention to in our own health and life?

Dr. Nader Sadeghi: 26:39

Yes, absolutely. It's very important. I thank you for asking that question. Because very important, actually. In the last 30 years, the rise of throat cancer has been steadily seen across the industrialized world; in Canada, North America, Europe, everywhere. And this is because of the human papilloma virus in the population. So it is rising, but hopefully over the next 30-40 years, we can see a drop in that. And that will happen only through a mass vaccination for HPV and that's already happening, obviously. A lot of youngsters in school getting HPV vaccination. And this would prevent not only this disease, but also prevent potentially cervical cancer in women, and will also decrease all kinds of other diseases that caused by HPV. Therefore, the hope that the disease will decrease over the next 30-40 years, but that requires in whole that the population is vaccinated. Now the vaccination is covered in the schools. Penetration, fortunately, is quite good. In Quebec penetration of vaccination schools, almost 90%.

Kelly Albert: 27:45

That's incredible.

Dr. Nader Sadeghi: 27:46

The rest of the population is actually trickling behind. And now, there's just about a year ago, there was a new indication for vaccination was actually prevention of head and neck cancer- prevention of throat cancer. So it's actually one of the indications for vaccination. And we recommend that adults as well, based on what has been studied, up to age 45 should have the HPV vaccination. So any adult that hasn't had vaccination as a teenager or youngster, and they should go get also the HPV vaccination.

Kelly Albert: 28:17

And is this something that you can speak to your family doctor about? If you meet those criteria- if you're under the age of 45, if you're interested in learning about this, can you can ask your doctor about getting this vaccine?

Dr. Nader Sadeghi: 28:29

Absolutely speak with the family doctors and they will prescribe the vaccine. The vaccine is used either in the family physician's offices or to the pharmacies. Usually requires a two to three vaccines and the qualification so they will just go to the pharmacy and receive the vaccine.

Kelly Albert: 28:47

Now, we don't have very much time left, we're in conversation with Dr. Nader Sadeghi who is a head and neck surgeon at the MUHC. We have been fundraising at the MUHC Foundation to support your research. How important is it to have philanthropic support for the type of research that you do?

Dr. Nader Sadeghi: 29:04

It's extremely important. In fact, everything we have done on our research on this HPV-related throat cancer and the treatment that we have developed now. And now gradually, I would hope the rest of the world adopts our treatments. It could not have happened without the philanthropic support. In fact, every part of this research in the last six years that we are conducting it at MUHC is supported by the philanthropic support. Without that we could not do it. Not only that, but philanthropic support also allows us to build on the research that we are doing and be able to go get additional support from the CIHR which is the Canadian Institutes of Health Research and other resources for the fundamental research that we carry out on this disease. So it helps us in many ways It allows us to conduct research and all of us to get actually get more support from the governmental agency for research.

Kelly Albert: 29:53

I think that's really important. I'm glad that we can support researchers like you if we're trying to pioneer new and better treatments for our patients. Dr. Nader Sadeghi, thank you so much for joining us on Health Matters.

Dr. Nader Sadeghi: 30:06

Thank you. Thank you for the opportunity and thank you for the interview.

Kelly Albert: 30:08

That is Dr. Nader Sadeghi who is the Director of the McGill Head and Neck Cancer Program and the Chair of the Department of Head and Neck Surgery at the MUHC. Next on Health Matters, the head of the MUHC's patients' committee joins us to share how they can help you navigate the health care system. Tarah is off this week. I'm Kelly Albert and you're listening to Health Matters on CJAD 800. If you've been in the hospital or supported a loved one who is going through treatments at the hospital, you know how overwhelming it can be. It can be stressful to get to all of your appointments on time, remember all the details about you or your loved one's condition and navigate the health care system in general. At the MUHC, there is a new committee that is designed to support patients, the families and the caregivers. It is the Users' Committee of the MUHC. And Ingrid Kovitch has recently been appointed the Chair of this committee, she joins me now. Good morning.

Ingrid Kovitch: 30:58

Good morning, Kelly. Thanks for having me.

Kelly Albert: 30:59

Thank you so much for joining us. So what is the Users' Committee of the MUHC?

Ingrid Kovitch: 31:04

The Users' Committee, which is probably known to many of the Patients' Committee is basically a group of elected volunteers. And our role from strictly a legal perspective is to inform users of their rights, and to defend these rights in the broadest of terms and in a wide range of settings. And as you mentioned, when we talk about users, we are referring not only to patients but also to their families and to their caregivers.

Kelly Albert: 31:31

I think that's important because you could be going to the MUHC every day, but it's not necessarily you who's being treated for it. So let's get into the rights. What do you mean by patient rights when you say this?

Ingrid Kovitch: 31:44

Yeah, so respecting health and social services defines 12 patient rights and these must be respected at all times. It's important to know, these aren't just suggestions. These are legally mandated requirements. Now, some of them are pretty intuitive. Most people probably know about them, or could guess them. For instance, of course, all users have the right to appropriate and high quality care. We have the right to receive this care and compassionate and humane fashion. We have the right to be informed. We have the right to consent and this means both to receive treatment and to decline them. But there's some other rights that might not be as well-known. And some of these include things like having the right to privacy and confidentiality, we have the right to access all the information in our medical files. And we have the right to file a complaint. So that's really the committee's legal mandate- to inform and protect these rights. But from a practical perspective, our job is twofold. First, we're here to assist users and we do this in really any manner that they might require. And secondly, we're here to promote initiatives that ultimately will improve the quality of services and the quality of care that's provided by the MUHC.

Kelly Albert: 33:08

We're in conversation with Ingrid Kovitch, who has recently been appointed the Chair of the Users' Committee at the MUHC. So I think we can maybe break it down in a case example for our listeners. So can we give an example of what sort of thing that you can particularly help a patient or a user with?

Ingrid Kovitch: 33:28

Users come to us for a number of things. There's ways we can help individuals and there's ways that we try to help on a more generalized or collective basis. So individuals seem to often come to us with various questions just about how this great beast of the MUHC works; how the system works. They have trouble sometimes finding or knowing about hospital services or resources. We can help inform them about them. We can help them access these things. We can hopefully sometimes help them reach who they need to reach. If they have forms to fill out, we can help them with this. And very importantly, we can help them navigate the complaints process. And this might be as simple as directing them to the office of the hospital ombudsman, which they may or may not even know about. It can even extend as far as helping them formulate the complaint itself. There's also things we could help with or at least try to on a more generalized collective basis. And these are things like addressing issues relating to the physical environment of the hospital or some of the sites. We can help improve the living conditions over long-term care patients. The MUHC has under its umbrella, a long-term care facility. And also we really try to help sensitize staff to the needs of specific groups. So they might be indigenous populations, persons with reduced mobility, persons who aren't housed or struggle with addiction, really any group of patients and users that have specific needs. Part of the way which we do this is that we actually represent the users on a number of primary committees, one of which is the Board of Directors. But what enables us to do that; in fact, the only way we can do it, is by listening to what users have to say about their experience. We want feedback. In fact, we need feedback, and we want to hear it all. We want to hear comments, suggestions, compliments, and of course, complaints. Because the only way for us to truly understand what's going on, and to address shortcomings in the system is to hear it directly from users. Again, this means patients, their families, and their caregivers.

Kelly Albert: 36:01

We're in conversation with Ingrid Kovitch, who is the chair of the Users' Committee at the MUHC, I think that is a lot that you do. To put it in, in very easy terms- you do a lot. So how do you support all of the users? Because the Glen site in general is a vast site, there are so many different areas of medicine that are represented there. There are so many possible users who are there, patients loved ones, caregivers. How do you connect with all of the different departments? And I guess you work with a bunch of advocacy groups as well?

Ingrid Kovitch: 36:43

We do not do this alone. Absolutely not. And just to clarify, the MUHC is far beyond just the Glen site.

Kelly Albert: 36:51

It's a great point.

Ingrid Kovitch: 36:52

There are other sites and hospitals- the Neuro, the General, the Allen, Lachine, Pavillion Camille-Lefebvre- our long-term care facility, the Reproductive Center, the Eye Center, I mean, I can go on and on. So it's really important to remember that we are the spokespeople or the voice of users at all these different sites. For sure, we can't do this by ourselves. Luckily, there are already a number of patient advocacy committees that are already in operation. And we hope to develop many more. Particularly, those that will represent groups that historically have really struggled to be heard. And so we work collaboratively with and we rely heavily upon all these different communities, and committees, and all with a shared goal of improving care for every single user within the MUHC community.

Kelly Albert: 37:53

We're in conversation with Ingrid Kovitch, who is the Chair of the Users' Committee at the MUHC. Unfortunately, we're short of time, but I really want to get our listeners to know how people can get in touch with this committee. How can patients or caregivers get in touch with you if they have a complaint or need help or need direction and navigating the system? How do they contact you?

Ingrid Kovitch: 38:15

Yes, so the committee is lucky enough to have an administrative assistant. And we do have a physical office on the fourth floor of the D Pavillion at the Glen site. But really the best thing to do and because all information regarding the room number, our phone extension, our email, everything can be found on the MUHC website, under Patients' committee. That's where they'll find everything.

Kelly Albert: 38:40

That's great to know. And like you said they can contact you with any question or concern and you'll make sure that they get directed to the right person.

Ingrid Kovitch: 38:47

Correct. That's it.

Kelly Albert: 38:48

That's wonderful. So to find out more information about the Users' Committee, that's MUHC.com. And look for patients' committee. Ingrid Kovitch, thank you so much for joining us on Health Matters and talking about the wonderful work you do.

Ingrid Kovitch: 39:01

Thanks. It's my pleasure and thanks for having me.

Kelly Albert: 39:04

I'm Kelly Albert, thank you for tuning in. What would you like to hear about on the show? You can write to me at healthmatters@MUHCFoundation.com. You can also follow the MUHC Foundation on social media, sign up to our newsletter, or hear things you may have missed at MUHCFoundation.com Tarah is back next Sunday. Thank you for listening to Health Matters and stay healthy.