For Every Heart

This week on Health Matters, Tarah Schwartz speaks with Dr. Jacqueline Joza about the need for cutting-edge cardiac equipment for the electrophysiology lab. Dr. Justin Sanders shares why we should shift our understanding of palliative care to quality of life care. Your risk of heart attack and stroke increases during the winter. Wendy Wray details the small changes you can make now to improve your heart health. And, Dr. John Kildea discusses the one year anniversary of the Quebec SmartCare Consortium. 

Cette semaine à Questions de santé, Tarah Schwartz discute avec la Dre Jacqueline Joza de la nécessité d’équipement cardiaque à la fine pointe pour le laboratoire d’électrophysiologie. Le Dr Justin Sanders explique pourquoi nous devrions transformer notre vision des soins palliatifs pour penser plutôt à des soins de qualité de vie. Votre risque de crise cardiaque et d’AVC augmente pendant l’hiver. Wendy Wray propose de petits changements que vous pouvez apporter pour améliorer votre santé cardiaque. Et le Dr John Kildea souligne le premier anniversaire du Consortium québécois de soins intelligents.

Transcript

Tarah Schwartz: 0:00

Hello there. Thank you for joining us. I'm Tarah Schwartz and this is Health Matters on CJAD 800. On today's show, did you know that your risk of heart attack and stroke increases in the winter months? We'll speak with an expert on what warning signs you need to look out for, and the small steps you can take now to improve your heart health. And later in the show, the holiday season can be especially difficult if you have a loved one in palliative care. We speak with the Research Director of Palliative Care at the MUHC, about how palliative care has changed over the years. But first, your heart beats thanks to tiny electrical signals. The correct timing of these signals is crucial because if your heart beats too fast or too slow, it can put your life in danger. These kinds of heart issues can happen at any age. The MUHC is fortunate to have an expert team of cardiac electrophysiologist to help patients living with these irregular heartbeats. Dr. Jacqueline Joza is one of those experts. And she joins us now. Thank you so much for being here.

Dr. Jacqueline Joza: 1:03

Well, it's a pleasure. Thank you for inviting me.

Tarah Schwartz: 1:05

Electrophysiology, it can be a complex thing to understand, how do you explain it?

Dr. Jacqueline Joza: 1:12

Electrophysiology is really the study of the heart rhythm. You actually explained it very nicely in your introduction. But it's where our heart has electrical signals that tell each chamber when to beat. And typically, the heart will then beat in synchrony. So the top chambers will contract and then the bottom chambers will contract. And that will lead to efficient blood flow through the heart, and then through the rest of the body. Sometimes some of those electrical signals become either problematic- the heart goes too quickly, or sometimes the electrical system goes too slow. And that's kind of when we step in.

Tarah Schwartz: 1:58

I've heard you describe yourself as an electrician of the heart.

Dr. Jacqueline Joza: 2:03

That's right. We sometimes jokingly called the Cath guys the plumbers of the heart, because they open up the arteries. But we're the electricians of the heart so we're dealing with either the slow heart rates or the very fast abnormal heart rates.

Tarah Schwartz: 2:18

I feel helps lay-people understand like me. Okay, what is it that you do electricians, I get it. Plumbers, I get it. Now, what kind of procedures do you do in an electrophysiology lab, which is called an EP lab? What kind of procedures?

Dr. Jacqueline Joza: 2:33

There's two really main types. We're either treating the slow rhythms or the desynchronization rhythms with either a pacemaker. There's many types of specialized pacemakers that we're actually doing a lot of research on as well. So there's that aspect. And then there's the aspect of ablation therapy where we're actually introducing catheters inside the heart through the vein or the artery in the leg, advance them inside the heart, we tickle the heart or we induce that arrhythmia, the abnormal fast heartbeat that's coming. We try and localize it and try and get rid of it. Some of your listeners may recognize the names of these fast rhythms, such as atrial fibrillation, or ventricular tachycardia, or PVCs are extra beats. So these are the types of ablations that we're doing to get rid of these abnormal heart rhythms.

Tarah Schwartz: 3:32

We're speaking with Dr. Jacqueline Joza a heart expert at MUHC; and we're talking about hearts that be too fast or too slow. Now I'm wondering, Dr. Joza, when dealing with the kind of issues that you're dealing with today, how much has changed in terms of how you treat this? Like when a person had a heartbeat that was too fast or too slow, 10-20-30 years ago; was it like open heart surgery to fix this? And how do you do it now?

Dr. Jacqueline Joza: 3:55

That's a great question. It was actually more medical therapy. Just kind of loading the medications on top of one another until patients felt really quite sick. Not treating the patient as a whole, just kind of trying to get rid of the arrhythmia. Not really realizing that these medications, some of them are quite toxic, in fact. There were a lot of side effects seen from these medications, so forth. Oh, my goodness, there has been an incredible movement ahead in electrophysiology over the last 20 years. Even more so over the last, I would say, five years where we've developed new technologies, new ablation catheters, or mapping systems to try and find where these rhythms are coming from and eliminate them. In fact, you'd be so surprised how often patients actually have these types of symptoms. It's not just here and there. It's actually quite a common disease. So it's actually quite gratifying.

Tarah Schwartz: 4:55

Would it be people just don't realize that their hearts are beating too fast or they think it's something that's going to pass or too slow? Is it something that we tend to just ignore?

Dr. Jacqueline Joza: 5:03

Well, it really depends on the type of arrhythmias, some patients will feel everything. Some patients will feel nothing. For instance, I'll give you a very run-of-the-mill example of atrial fibrillation. Atrial fibrillation is one of the most common abnormal heart rhythm disorders that we can see; affecting millions of Canadians. And two thirds of those patients with atrial fibrillation are actually are asymptomatic, so they don't even know that they have atrial fibrillation. It becomes an issue because we know that with increasing risk factors like increasing age, that atrial fibrillation actually can cause or lead to stroke, or even earlier onset of death and so forth. And so that's why we're trying to intervene early in many of these heart rhythm disorders.

Tarah Schwartz: 5:50

The MUHC foundation is fundraising this holiday season to outfit a new EP lab, electrophysiology lab at the MUHC. You may have seen this campaign; it's called For Every Heart on social media or perhaps some of you who are listening have received something in the mail called For Every Heart. So I'm asking you Dr. Joza who this is such an important thing for you. Why is it so essential to have a dedicated electrophysiology lab at the Glen site?

Dr. Jacqueline Joza: 6:15

Honestly, I can't tell you how important it is for us. It's quite discouraging, I have to tell you, not to be able to treat patients in a timely manner. I mean, the wait lifts are incredible for these types of procedures to improve quality of life, reduce the risk of stroke, reduce the risk of death in patients. And, without this lab, I think we're really not advancing. We're not doing the right thing for our patients. With this particular electrophysiology lab that we're building, and we're so grateful to you, Tarah for helping us spread the word. But with this new lab, we'll be able to treat patients who are potentially at higher risk. We're going to be using this lab for new research projects, new types of ablations that we're doing in even higher risk individuals. This is clearly the next step in electrophysiology and we're again, we're grateful. One thing I have to say though, is just to let you and your listeners know, is that McGill University, what we have here at the MUHC; our cardiac electrophysiology group is by far one of the best that we have in the country. And so it's quite important to us to continue this work that we're doing with this new electrophysiology lab.

Tarah Schwartz: 7:37

Absolutely. And if you want to learn more about the EP lab and even watch a video of a cardiac procedure being done, if you want to donate to the campaign to build this lab, or just learn more head to MUHCFoundation.com. Scroll down the page until you see For Every Hearts and it is a pretty cool video to see. So I encourage you to do it. Dr. Joza, what do you love most about what you do?

Dr. Jacqueline Joza: 7:58

I love to make patients feel better. It's really gratifying. We help patients every day and just to improve their quality of life, reduce their stroke risk. I mean, this is something incredible for me.

Tarah Schwartz: 8:11

Do most patients who come out of these procedures which is not a big gigantic procedure anymore. Do most people come out and think wow, that was easier than I thought it was going to be to fix this problem?

Dr. Jacqueline Joza: 8:21

I think so. I think so. It's always scary to not know what you're going into, right? The first thing that they always comment on when they go into the room is how big the screens are or how many people are in the room. How many nurses we need, how many anesthesiologists we actually need to do the procedure and so it's one of the things that they always comment on. But I think that most patients do great with this procedure, with the procedures we're doing now, and I do think that they're surprised.

Tarah Schwartz: 8:49

Dr. Jacqueline Joza is an electrophysiologist at the MUHC. And the MUHC Foundation is helping to raise money for a brand new EP lab. It's called the For Every Heart campaign. You can see it on social media, or you can go to MUHCFoundation.com to learn more and watch a very cool procedure. Dr. Jacqueline Joza, thank you so much for joining us on the show. Appreciate your time today.

Dr. Jacqueline Joza: 9:10

Thank you very much.

Tarah Schwartz: 9:11

Next up on Health Matters, how palliative care has changed over the years. I'm Tarah Schwartz. Welcome back to Health Matters on CJAD 800. The holiday season can be especially difficult if you have a loved one in palliative care. This is a time of year where we want to spend time with our loved ones and celebrate happy moments, not painful ones. The MUHC is fortunate to have many compassionate health care workers who specialize in palliative care and strive to make patients who are nearing the end of their lives as comfortable as possible. Dr. Justin Sanders is the Director and Kappy and Eric M. Flanders Chair in Palliative Care at McGill. He is also the Research Director. Thanks so much for joining us, Dr. Sanders.

Dr. Justin Sanders: 9:49

Thank you so much for having me, Tara.

Tarah Schwartz: 9:51

So it's unusual time of year to be talking about palliative care but I think the people who are in it will be grateful to sort of hear their voices reflected and to hear people talking about their challenges. I wonder how many how palliative care has changed and evolved over the last 5-10-15-20 years?

Dr. Justin Sanders: 10:08

I think that the key insights that we've gained in the last 20 years are really about how we conceptualize the role of palliative care in the lives of people who have a serious illness. It used to be, for example, that you were diagnosed with say cancer or some end-stage lung or heart disease, and then you would get curative treatment, curative treatment, curative treatment until the doctor said, there's nothing more for you, and we're sending you to palliative care. And it was sort of a hard stop and then people would, typically shortly thereafter die. And what we've realized is that the integration of palliative care from the diagnosis of a serious illness is a critical part of how we provide the best care for patients in our health care systems. And there's clear evidence that suggests that the earlier people receive palliative care in the course of their serious illness; the better they feel, and in fact, sometimes the longer they live, which is really what people are looking for. To live as well as and as long as possible.

Tarah Schwartz: 11:06

I'm wondering how people feel about it. I think when someone's being confronted with a difficult disease, or health care challenge, they want to think about what I can do to live. So does bringing palliative care in earlier scares some people?

Dr. Justin Sanders: 11:22

It certainly does. But that's a function, not of what palliative care does, and how we use palliative care. There's a way in which there's a vicious cycle in which if palliative care is used only as end of life care, then people come to associate palliative care with end of life care. And this is a self-reinforcing prophecy and a kind of vicious cycle. What we know is that when clinicians can speak openly about the benefits of palliative care to their patients and patients who enroll in that; then they have a much better experience through the course of their serious illness.

Tarah Schwartz: 11:52

I see. Okay, I understand what you're saying. Don't just associate it with that very, very end stage of life. So how do you explain it when you're reaching out to patients earlier in their illness? How do you describe it? How do you explain it?

Dr. Justin Sanders: 12:04

I describe it in much the same way I describe it to my colleagues, which is that palliative care is a medical specialty that is focused on quality of life for people affected by serious illness. Not just patients, but also their caregivers. The way that we do this is through expert management of their symptoms, but also our attention to the things that matter most to them and help them both surface those and ensure that those are at the center of their care-planning. Because it really helps them figure out how to spend their time. There's many ways in which when we neglect the things that matter most to people, we bring them down treatment roads that assume that the only thing that matters to people is living as long as possible. And sometimes in doing so we actually shorten their lives because a feature of serious illness is that the treatments sometimes can make us worse.

Tarah Schwartz: 12:51

We are speaking with Dr. Justin Sanders, and we're talking about palliative care. So how do you support patients and their loved ones when in palliative care?

Dr. Justin Sanders: 13:02

I think what's important to distinguish is- I don't think of people being in palliative care, I think of people as receiving palliative care.

Tarah Schwartz: 13:09

Noted.

Dr. Justin Sanders: 13:09

And it's a critical distinction, because if we think of palliative care as something that people are in, then you sort of reinforced that idea that palliative care is something that you get after everything else is done. Rather than concurrently with curative treatment, in fact, or disease modifying treatment. Part of the way we do that again, is by making sure that we attend to the symptoms that that are bothersome to people, whether it's pain or nausea, all the things... fatigue, the things that we know come with a variety of serious illnesses. And part of it is helping people prepare for the possibility of what may come. Thinking about what's important to them and making sure as I said that we ensure that that is at the center of their care and decision-making and that everybody in the system knows about it.

Tarah Schwartz: 13:54

I wonder Dr. Sanders this new way, possibly of seeing palliative care as quality of life care versus just quality of death care. How widespread is that? Is that changing throughout the city, the province, the country? Like how is that starting to catch on or is it?

Dr. Justin Sanders: 14:11

I would say that Quebec and Montreal is as a leader in palliative care in its inception. The term palliative care was coined here in Montreal by a physician at McGill, I think has actually fallen behind in some ways in this way globally. I think that the discussions about palliative care and its relevance to people with serious illness across the course of their illness is something that's much more advanced in other places than it is here. And I think this is something that we have a lot of work to do. And part of what we need is people in the community to be asking for palliative care when they are diagnosed with a serious illness to make sure that they're getting the best care possible.

Tarah Schwartz: 14:51

So how do you change that cycle? If that's what people have been doing, and that's how they associate palliative care. How do you change that? How do you get people talking about it, which is what you say needs to happen?

Dr. Justin Sanders: 15:03

Part of the way that people access palliative care is through their physicians. And so one of the things we have to do is educate physicians in the community about how to talk about palliative care. There was a great article recently by colleagues in Toronto that talked about how palliative care is the umbrella and not the rain. Even though we sometimes think of it that way. Imagine have a physician saying, look, here's an umbrella, just in case it rains. Because we want to make sure that if you're caught out in it, that you don't get drenched. Versus what typically happens, which is the physician running up to the patient already drenched in rain, and saying, here's an umbrella, which is really a great metaphor for how we often deliver palliative care versus its benefit.

Tarah Schwartz: 15:46

Yeah, it really is, it helps you to see it differently. I don't even know if you have this kind of answer. But maybe some form of answer, what percentage of populate of the population ends up in palliative care? I would think it would be fairly significant, like short of an abrupt death. I don't know, like getting hit by a car or having a serious illness where you pass away quickly do most people end up in palliative care?

Dr. Justin Sanders: 16:09

You know, again, I want to distinguish between receiving palliative care and being in palliative care. I don't know the answer to the question, but it's certainly true that a lot of patients who come into our hospitals, at the very end of life are taken care of by palliative care physicians, either in a consulting role or in a palliative care unit. And, we have a lot of work to do to understand just how many people receive palliative care as a percentage of those at the end of life. I think one of the clear discussions, in this country and in this province, has been about how we think about palliative care in relation to medical aid in dying. And I think it's really important that we don't set up medical aid in dying and palliative care in opposition to each other as choices at the end of life. Really, anybody who's thinking about medical aid in dying should have access to palliative care to make sure in whatever time is left, that we're doing everything we can to help them live their life as well as possible. Because really, that's what palliative care is about helping people live as well as possible until the end.

Tarah Schwartz: 17:10

Yeah, I love that. And if you had one message to convey to our listeners about palliative care, what would it be? What would you like them to know?

Dr. Justin Sanders: 17:18

I would say that the key message that I would like to be for people to know is that if you are diagnosed with a serious illness or are affected in some way by a serious illness for a loved one. That being a progressing end-stage organ disease, whether it's your kidneys, your lungs, your heart, your liver, or advanced cancer, or neurologic disease, that if you're not getting access to palliative care, you're really not getting the best care possible in the health care system. And this is something that we have a lot of evidence to demonstrate. And so I want people to understand that that the best care possible includes palliative care. And early; earlier in the course of illness, not just at the end of life.

Tarah Schwartz: 18:00

I'd love that asked for it because it's about quality of life.

Dr. Justin Sanders: 18:04

Ask for it, exactly. That helps us build our services, our capacity to meet that is built by the demand that the patients and their loved ones bring in to us.

Tarah Schwartz: 18:14

I think that's a really great thing to remind people of. You're so passionate about what you do, Dr. Sanders. Where does that come from?

Dr. Justin Sanders: 18:23

I think being at the bedside with patients and seeing the value of them feeling well and of having the kinds of conversations that really build connection between us and between them and their loved ones. I've really come to the place in my life, that we're all trying to make our way through life in the best way possible, and to make meaning of our experiences and that becomes particularly important at the end of life. The ability to connect with people and help them make meaning of their experience and the context of their relationships is incredibly powerful and sustaining for me. And I think it's one of the reasons that many of us go into health care periods. I'm excited not just about what I do on a day-to-day basis, but the ways in which palliative care can help improve the health care system to make sure that all people feel cared for and that the people caring for them have their best interests and the things that matter most to them in mind.

Tarah Schwartz: 19:20

Dr. Justin Sanders is an expert in palliative care. It is very inspiring speaking to Dr. Sanders, thank you so much for coming on the show and for your time.

Dr. Justin Sanders: 19:28

Thank you so much.

Tarah Schwartz: 19:29

Coming up on Health Matters, your risk of heart attack and stroke are highest in the winter months. I'm Tarah Schwartz and this is Health Matters. Heart issues can happen at any time in your life. But did you know that your risk of heart attack and stroke increases in the winter months? Knowing the warning signs and making small lifestyle changes to prevent heart issues is something that my next guest takes seriously. Wendy Wray is the 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: 20:00

Thank you for having me.

Tarah Schwartz: 20:01

So first question, why does the risk of heart attack and stroke go up in the winter?

Nurse Wendy Wray: 20:08

I think there are probably a number of factors. One of the things is that during the winter because of our cold environment, our blood pressure can increase. And when the blood pressure increases, the heart has to work harder, and puts a greater risk for heart attack, versus in our warmer time as its times of the year.

Tarah Schwartz: 20:31

And maybe before ask you a few other questions, Wendy. Maybe help us find the distinction between a heart attack and a stroke, help us understand.

Nurse Wendy Wray: 20:41

What happens with a heart attack is that the heart muscle does not get enough oxygen. It's the blood to carry the oxygen to the heart and if there is narrowing or blockages of the arteries that are supplying blood to the heart or they close up completely, then the blood supply is cut off. And we have heart muscle damage, and that's a heart attack. A stroke is a little bit different. It takes place in the brain, and a big secondary to a clot or a bleed; but again, affects the circulation of blood to the brain. And all of a sudden, you will feel a numbness and not able to move usually one side of the body or not. So not able to lift your arm, speech will be slurred, there will be a slackening in the face, etc. So the symptoms can be quite different. With a heart attack more are to experience some chest discomfort, burning, heaviness, tightness, pressure, squeezing with maybe shortness of breath and sweating. Whereas with stroke, it's actually physically you are unable to speak normally, lift your arm, communicate, etc.

Tarah Schwartz: 21:50

Now, you described all of those symptoms really well. Do those tend to happen very close to when you are having a heart attack or a stroke, or are there symptoms that people should be looking out for before these illnesses?

Nurse Wendy Wray: 22:03

Like warnings symptoms?

Tarah Schwartz: 22:04

Yeah, warning signs.

Nurse Wendy Wray: 22:06

From a heart attack point of view, sometimes people can think of how they had morning symptoms that didn't recognize. And that would be for instance, when you go to shovel snow which is we're exerting ourselves. It is a physical activity, especially that snowball snow, the snowman snow versus the lighter snow. It's very hard work. If when you're doing that activity, you do get some chest discomfort. As I said, burning heaviness, tightness, pressure squeezing, it may radiate down your left arm or into your back, especially with shortness of breath and sweating, then that's a warning sign. Because if you stop shoveling and the discomfort goes away, that's what we call angina and angina is a discomfort that comes from the heart with not getting enough oxygen. But if it goes away, when you stop that activity, then it's more of a warning signal. If it doesn't go away when you stop that activity. That's different. That could be a heart attack, and you should call 911 and go to the emergency.

Tarah Schwartz: 23:16

Okay, wow. Now at the Women's Healthy Heart Initiative, you put a lot of attention on prevention, that is this sort of the purpose is to prevent heart disease and stroke. What are some of the things that people can do now to prevent heart issues?

Nurse Wendy Wray: 23:32

There are a lot of lifestyle things that we should be doing. Regular physical activity, because this improves our heart health. So when we do go out into the snow, into the cold air and exert ourselves, we're able to tolerate it. Eating well, which we tend to go off the tracks a little bit during the holidays. Eating things we don't normally eat, perhaps drinking more alcohol than normal. So if we can just keep to those better habits of making better choices, not eating maybe as much as you normally would, if you're eating a heavier meal. Watching our alcohol intake. And to keep up our regular physical activity, because that helps keep our heart in better condition at the same time.

Tarah Schwartz: 24:15

As you mentioned, that is something that is difficult to do over the holidays. The holidays are a time to let down your guard, maybe whoop it up a little bit more than you might at other times of the year. Are there ways to indulge but still be taking care of ourselves? Or do we just have to come to terms with this is the time of the year we're not going to take care of ourselves as much?

Nurse Wendy Wray: 24:38

Well, that's right... it is more of a challenge. I think I'm kind of a moderation person. So if you're going to eat things you don't normally eat; maybe have less. A smaller serving than you normally would. Try and make sure to get out and go for that walk. Okay, get bundled up and go out for a nice 30-minute walk or whatever. Try and keep those regular things up a little bit more. And it's hard, as you said, with time, and we're tempted by food and maybe drinking a little bit more than we normally would during the year. But just again if we moderate that, and maybe just have a little bit less than we would like to we can do very well. We can enjoy the holidays at the same time, not doing ourselves any harm.

Tarah Schwartz: 25:28

Okay, so if you're going to go to town on that cheese plate, you want to put your coat on and go for a nice, hearty walk to try find some balance.

Nurse Wendy Wray: 25:38

Absolutely, absolutely. And maybe have a bit of a smaller serving than you would normally have. But I think also that physical activity is really important. And they say there's no bad weather, just bad clothing, right. And so if we bundle up. If we bundle up and get the proper boots on and whatever. That walk will help with our digestion, as well as good for us physically, from a fitness point of view.

Tarah Schwartz: 26:02

We are speaking with MUHC nurse Wendy Wray. We're talking about heart attacks and stroke and just generally how to increase the health of your heart now, and especially in the winter months. So your focus is on women's heart health, Wendy. What is your advice to women this holiday season in terms of caring for themselves specifically?

Nurse Wendy Wray: 26:22

I think because very often, we're making special meals. We're entertaining. We're welcoming family in and that we tend to take less time for ourselves. So I think again, it's really important to take that 20 minutes or 30 minutes and grab some of your guests, and ask them to come out for a walk with you. And again, we're in the kitchen a lot, and we're around the food a lot. So just moderation. In that, we want to have these special things. We don't want to deprive ourselves, but have a little bit less than you would maybe like to have. And I think if we're able to do that, then we can enjoy our holidays, as well as keeping ourselves safe and healthy.

Tarah Schwartz: 27:09

Now I know that you have said in the past that women are the ones that tend to ignore their symptoms if they are having them. So maybe just talk to that a little bit Wendy so that if people do feel something, they don't push it to the side.

Nurse Wendy Wray: 27:24

Absolutely. Thank you for bringing that up, Tarah. It's so important for women to know and actually men as well, that we cannot decide at home, whether we're having a heart attack or not. If we're having a discomfort in our chest, burning, heaviness, tightness, pressure or squeezing, radiating to the arm or into the back, feeling very tired, short of breath, generally unwell. And the reason we can't decide at home if we're having a heart attack is, as healthcare professionals, there are three things we need to know to decide if you have a heart attack when you come into the emergency room. Number one- we need to listen to you describe your symptoms. We need a blood test, and we need a cardiogram. And clearly you can't do that at home. I know it's a busy time and nobody has time to go to the emergency room and it's afraid they're going to sit there and wait for hours. Be sure when you are triaged, when you first go to the emergency room and you're triaged by the nurse. Be sure to make it clear why you are there. You're there because you're having a chest discomfort, you're feeling unwell, and you're afraid you're having a heart attack. This will help get you the care that you need in a timely manner. So I think it's very important as you said, Tarah, not to ignore the symptoms, to know that you cannot decide at home whether you're having a heart attack. You need a health care professional to do that. And be sure to make it clear why you're there. Because that will make it easier for them to do their job and to give you timely care.

Tarah Schwartz: 29:01

Listen to Wendy Wray, people. Listen to Wendy Wray. She knows what she's talking about when it comes to hearts. Wendy Wray, thank you so much for joining us on Health Matters. It's always a pleasure to speak with you again.

Nurse Wendy Wray: 29:10

Thank you for having me. Happy holidays, everybody!

Tarah Schwartz: 29:13

You too. Happy Holidays, Wendy. Next up, an app designed to empower patients by putting their medical information into their hands is celebrating a milestone. I'm Tarah Schwartz, you're listening to Health Matters. December 10 was the one-year anniversary of the Quebec SmartCare Consortium. This consortium was created to ensure that patients have access to their health data. How great would that be having access to your own health care data? It is built off the technology of Opal. This app was created at the Research Institute of the MUHC, right here in Montreal. Its mission is to empower patients. Dr. John Kildea is a medical physicist at the MUHC and co-founder and lead of Opal health informatics group at the RI-MUHC. Thank you so much for being here, Dr. Kildea.

Dr. John Kildea: 30:02

Thank you.

Tarah Schwartz: 30:02

So let's begin with the Opal app. How do you explain what that is and what it does?

Dr. John Kildea: 30:08

Okay, so Opal is a mobile phone app that patients at the MUHC can download from the App Stores. And with an access code that they can get at the hospital; in particular, in the Cedars Cancer Center, they can log in and access lab results and other information such as appointments at the Cedars Cancer Center at the MUHC.

Tarah Schwartz: 30:29

Now, I know we're at the stage now where only certain patients can have access to it. What does it give those patients access to?

Dr. John Kildea: 30:37

Yes, so at this moment, it's mainly available in the Cedars Cancer Center, where patients in radiation-oncology can get access to their appointments, and information about the appointment, such as where to go, maps of the cancer center, and how to prepare for appointments. Also their diagnosis information. Copies of the clinical notes that are written by the clinicians; as well as their lab test results. It's also available outside of radiation-oncology, but at the moment, we don't have the clinical notes outside of radiation-oncology.

Tarah Schwartz: 31:10

And what has been the feedback from the patients who are using this app in terms of what it gives them?

Dr. John Kildea: 31:19

The feedback from the patients who are using it has been phenomenal. In fact, some of our patients said that they can't function without it because it's so important for patients who are undergoing chemo for example, to be able to access the lab results and to see how they're doing in terms of their immune system. Then to be able to take precautions accordingly. So it's really something that empowers patients with access to their own data and information about their health.

Tarah Schwartz: 31:45

Tell us a little bit about the history of this app and this idea of empowering patients with their health care data, Dr. Kildea.

Dr. John Kildea: 31:53

Yes. So Opal started as a project in 2014. And it started with a patient. Her name was Laurie Hendren. She was also a professor of computer science at McGill. And she was receiving radiotherapy under the care of my colleague, Dr. Tarek Hijal, who is the Chief of Radiation Oncology at the MUHC. Now, Tarek and I were already working on a number of projects to do with informatics. So when Laurie, the professor of computer science offered to help, Tarek introduced her to me. The three of us hit it off and we decided to work together. It was really Laurie who identified that patients, like her, need access to their medical data. And so we worked together to build something to make that happen.

Tarah Schwartz: 32:36

So Laurie had cancer and she passed away from cancer?

Dr. John Kildea: 32:40

That's right. Unfortunately, Laurie passed away in 2019. But not before we had gotten Opal up and running, and the first patients had already started to use it, which was great.

Tarah Schwartz: 32:50

What a wonderful legacy. We're speaking with Dr. John Kildea. We're talking about an app that puts medical information into the hands of patients. So Dr. Kildea, what is your hope in terms of having more and more patients use this app and have access to that? Is there a timeline of how you see it growing?

Dr. John Kildea: 33:08

Yes, over the last year, as you said in the introduction, we created something called the Quebec SmartCare Consortium. And this is really a project to take Opal to the next level, which is really to strengthen the technology that we're using, and get data flowing between patients and clinicians, and between clinicians and patients. So back and forth. And I would really love to see that this will be taken up over the next few years, all across MUHC. And ultimately, this or something like this across the province.

Tarah Schwartz: 33:41

So explain to us what the Quebec SmartCare Consortium is and how that would help patients.

Dr. John Kildea: 33:46

Okay, so the Quebec SmartCare Consortium is really about taking all the partners who have an interest in data flowing between patients and clinicians and clinicians and patients. Those include patients, clinicians at the MUHC, researchers; such as myself, and also industry partners. So we are working with some industry partners as well who are providing us their technologies; such as, wearable devices, smart watches, smart bracelets, that we can get data coming from patients back into the hospital as well.

Tarah Schwartz: 34:19

Okay, so now you've celebrated, December 10, I mentioned was your one-year anniversary. Have you seen a lot of advancements improvements over the last year? This one-year anniversary?

Dr. John Kildea: 34:29

Yes, absolutely. So over the last year with the Consortium, we got a large grant from the Quebec Ministry of Enterprise and Innovation that has allowed us to really accelerate the development of Opal and building the infrastructure, the secure infrastructure to allow us to share the data with patients and for patients to share the data with their clinicians as well. So we've really been able to work a lot on this and putting in place; not just the infrastructure but also the governance around the data to make sure that everything is done in a clear and proper way for security and for managing data correctly.

Tarah Schwartz: 35:05

I think we all would love to have access to our healthcare data. I'm sure a lot of people believe that this should already be in place. But I imagine it's a very complicated thing you mentioned, we needed to be have privacy issues and security. Talk to a little bit more about what the challenges are.

Dr. John Kildea: 35:23

The first challenge is that the data in the health care system are what we call siloed. They're in many different systems. First of all, we have to get access to those systems so that we can then bring the data to the Opal platform, and then share the data with patients. So there's an issues around interoperability so that all our systems are speaking the same language to be able to transfer the data. And then there's issues around making sure all the security and the cybersecurity and all those issues are taken care of correctly, as well. We need to make sure that we're in compliance with all the regulations that are required. And ultimately consider that we have patients and our clinicians on board and that everyone is buying in.

Tarah Schwartz: 36:01

And now you've been working on this, as you mentioned since the idea of it since 2014. Is there something that has surprised you or inspired you during these years of getting this up and running?

Dr. John Kildea: 36:14

When we started, it was a small project with Laurie. And Laurie was really fighting to get access to our data. And over the years, we've really seen the acceptance of giving patients the data has really grown. So initially, we found that there was some reluctance to provide patient with their data. But now, it's changing quite a lot. So as you know, we all have apps that we're able to access all of the other data that are part of our life, and nowhere health care data is becoming part of that. So that's the thing that has really changed.

Tarah Schwartz: 36:46

Which I think is a great thing. And I'm sure that it will be very popular because I think a lot of people would love to have it. How does philanthropy help projects like Opal and the Quebec SmartCare Consortium?

Dr. John Kildea: 36:56

Philanthropy is really important, because philanthropy allows us to plant the seed that gets things started. So Opal started with philanthropy, in fact. It allowed us to get moving, to put something like a prototype in place, that we can then go to the larger funding partners, and demonstrate to them that this is something worthwhile. So philanthropy helped us to get started.

Tarah Schwartz: 37:21

Looking forward to seeing how it evolves over the years. So congratulations on the one-year anniversary and thank you for taking the time to talk with us today, Dr. Kildea.

Dr. John Kildea: 37:30

Thank you very much.

Tarah Schwartz: 37:31

I'm Tarah Schwartz. Thank you so much for tuning in. Since our next couple of shows will be our best of episodes to get a bit of a break over the holidays. I want to take this opportunity to wish each and every one of you a safe joy-filled holiday season. I also want to thank two people without whom this show would never get to air every week- show producer and Senior Communications Officer at the MUHC Foundation, Kelly Albert and studio producer here at CJAD 800 Marco Campagna. I couldn't do it without them. Thank you so much again for listening everyone and stay healthy.