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Episode Summary
What happens when a physician becomes the patient—and then an entrepreneur? Pediatric endocrinologist Dr. Shazhan Amed shares her harrowing, transformational journey through toxic epidermal necrolysis (TEN), a rare, life-threatening reaction often triggered by medications. Shazhan opens up about pain, fear, advocacy, and the moments of kindness that sustained her. She then connects those lessons to why she founded Haibu Health: to pair empathy with data and improve how teams communicate, coordinate, and care—especially in pediatric diabetes.
Why you should listen
- Rare, lifesaving insight: Understand toxic epidermal necrolysis from the inside—how it presents, why minutes matter, and what compassionate care looks like in crisis.
- Practical advocacy tips: Concrete ways families can protect sleep, manage pain, and coordinate care—the small changes that change outcomes.
- Clinician perspective, transformed: Hear how becoming a patient reshaped a physician’s views on communication, documentation, and empathy.
- Innovation with heart: See how Haibu Health blends data + humanity to improve team-based care in pediatric diabetes (and beyond).
- Leader playbook: Mentorship, defining purpose, and making uncomfortable leaps—how to build mission-driven work that lasts.
- Caregiver validation: If you’ve stood bedside, you’ll feel seen—and leave with language and ideas to be heard in the system.
- Actionable takeaways: Simple practices any clinic can adopt tomorrow: batch vitals, explain the plan, involve caregivers, and treat kindness as care.
Episode highlights
- 00:00 – Welcome & setup: why this story matters
- 01:16 – Who is Dr. Shazhan Amed: clinician, researcher, founder
- 02:50 – What is toxic epidermal necrolysis (TEN) and how it presents (connection to SJS/TEN spectrum)
- 06:39 – Mentors who changed everything—from lab to fellowship to leadership
- 10:06 – Pediatrics is relational: caring for the child and the family
- 13:11 – The day life flipped: fever, blisters, rapid decline
- 15:39 – ICU & burn unit: pain, vision loss, and the sound of urgency
- 18:58 – Advocacy in action: batching vitals, protecting sleep, controlling pain
- 21:00 – Music therapy & humanity at the bedside
- 23:56 – Caregiver trauma and the physician who empowered her husband
- 29:14 – Coming home: support networks and the non-linear path to discharge
- 30:01 – Lessons for clinicians: time is gold; communicate with empathy
- 31:36 – From insight to impact: the origin of Haibu Health
- 36:28 – Leading with purpose: defining a personal “why”
- 39:00 – Joy & recovery: sabbatical, family time, tennis, and a travel gem (Matera, Italy)
- 41:26 – Closing, calls to action, and where to connect
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Dr. Shazhan Amed
CEO & Founder, Haibu Health | Clinical Professor, UBC | Pediatric Endocrinologist, BC Children’s Hospital
Dr. Shazhan Amed is a pediatric endocrinologist and clinician scientist whose work centers on digital health, big data, systems science, quality improvement, and health system re-design. She is the CEO and Founder of Haibu Health, a digital technology platform designed by and for children living with type 1 diabetes, using data and AI to deliver a personalized and preventative care experience that helps kids thrive.
Her career goals are threefold: to be an empathetic, highly proficient, and innovative health professional; to conduct pioneering research that meaningfully improves the long-term health of children and youth; and to remain balanced in her life as a professional, mother, and wife.
Transcript
Episode 9
From Physician to Patient to Pioneer: Dr. Shazhan Amed on Surviving TEN and Building Haibu Health
[00:00:00] Ursula: Welcome to Amplify – Elevating Patient Voices, a podcast powered by Patient Voice Partners, where real stories spark bold conversations. I’m Ursula Mann.
[00:00:12] Brent: And I’m Brent Korte. Together [00:00:15] we’re talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
[00:00:21] Ursula: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.[00:00:30]
[00:00:33] Ursula: Welcome back to Amplify, where we explore the power of lived experience and how it feels transformation across healthcare, innovation and human connection. I’m here today with my co-host, Brent Korte, and [00:00:45] today’s guest, Dr. Shazhan Amed, embodies transformation. She’s a pediatric endocrinologist at BC Children’s Hospital, a clinical professor EBC, and a national leader in pediatric diabetes research.
[00:00:58] Ursula: She spent her career [00:01:00] redesigning systems of care from big data to digital health to improve the lives of children living with diabetes. However, what makes Shazhan’s story truly extraordinary is the perspective she gained when life flipped the script, when she went from being a [00:01:15] physician to being a patient.
[00:01:16] Ursula: And that experience didn’t just change how she practices medicine, it reshaped how she sees the entire healthcare system. And now as founder and CEO of Haibu Health, she’s turning those lessons into action building technology [00:01:30] that brings empathy and intelligence together to transform care. We’ll talk today about what first drew to medicine, how becoming a patient changed everything she thought she knew, and what it means to lead the next generation of digital health innovation.
[00:01:44] Ursula: The [00:01:45] calling to medicine, the shift to being a patient, and the leap to being an entrepreneur. Brent, what are you thinking about today’s show?
[00:01:51] Brent: I’m very excited about having the discussion with with Dr. Amed. And really excited just to hear more about her story. It’s such an interesting [00:02:00] background and not only background, but a journey that she’s gone through.
[00:02:03] Brent: But how are you doing, Ursula?
[00:02:05] Ursula: I’m doing good weekend whiz by, and I’m excited to dive in with you. It’s In preparing for today’s show, Brent, I had to do a little bit of digging to learn a little bit more about this [00:02:15] disease that Shazhan faced and so toxic epidermal necrolysis called TEN for short.
[00:02:21] Ursula: Have you heard of this before?
[00:02:23] Brent: I had not, I’d heard of its predecessor Stephen Johnson Syndrome but hadn’t heard much about it. So it was interesting to [00:02:30] read about that and the severity and we’ll get into that a little bit, I think, in the conversation. But I think that, the transition, as you said from being a healer and a physician, especially pediatric endocrinologist. and then to being a patient and something that’s had to deal with. I’m just looking forward to that. [00:02:45] That conversation and then what’s driven that in the entrepreneurial spirit that certainly is, that she has so.
[00:02:50] Ursula: I love that, Brent. And just before we dive in for our listeners, I’m gonna share some statistics on TEN because it certainly was news to me and it’s very [00:03:00] rare, and when something is rare, it makes it that much harder to recognize both for patients and providers.
[00:03:06] Ursula: As you said, TEN is along the related spectrum of Stephen John Syndrome, and TEN alone is perhaps about a case per million per [00:03:15] year. What ends up happening is people have a reaction to a drug. More than 80% of cases are triggered by medications. The first symptoms that happen are flu-like symptoms, fever, cough, and then all of a [00:03:30] sudden there’s a rapid onset of a widespread rash across your body, typically tender red purple spots, and then large blisters.
[00:03:38] Ursula: Other parts of the body can be affected Such as the mouth eyes, respiratory tract. And what happens [00:03:45] is when more than 30% of the body surface is affected in the skin, that’s when diagnosis might happen. But as I said, it’s very rare, so hard to understand what’s happening. And certainly very quick medical attention is very [00:04:00] important.
[00:04:00] Ursula: The other thing is this can end up killing a lot of people. Mortality is about 34% of people that don’t make it. So all the more reason I’m very appreciative to share awareness of what is happening to help save some more lives out there that [00:04:15] this happens to other people. They can get picked up quickly and treated.
[00:04:18] Ursula: So that’s what we’re gonna be chatting about today. What are your thoughts just before we dive in?
[00:04:22] Brent: No, that’s great. And just like all the things that go with this particular condition. And I guess what I’m interested to talk about as [00:04:30] well is that journey as a patient because I think there are many conditions and many diseases where there’s the diagnosis where as you described in the prognosis and so on, which in this case is very severe, but it’s the other components as well.
[00:04:43] Brent: What about the, the. [00:04:45] The family, the caregiver, that sort of thing. But also the, there’s other things to manage. There’s pain, there’s, nutrition, other components I think that are, that, that’ll be interesting to talk about. Look, really look, looking forward to that.
[00:04:57] Ursula: I think that’s so important.
[00:04:59] Ursula: All the things that you [00:05:00] talked about, Brent, and with this condition as well, there is also things that people can have to live with longer term after they recover, and that has physical and emotional supports and considerations as well, even [00:05:15] after things have settled, so to speak. So with that being said, I’m really delighted to
[00:05:21] Ursula: Welcome, Dr. Shazhan Amed to our program. And Shazhan. To kick things off, you’ve built such an impactful career in pediatric endocrinology. [00:05:30] What first drew you to medicine and working with children and families?
[00:05:34] Shazhan: Wow, that’s such a great question. I was actually very young when I started medical school. I was.
[00:05:39] Shazhan: 20 years old and hard to say what attracted me, except [00:05:45] that my dad told me at a very young age that I should be a doctor or will be a doctor. And to be honest, I remember I watched this show, this comedy show of a, and it was about a pediatrician, I can’t remember the name. And I used to [00:06:00] watch it pretty regularly and I just loved his life.
[00:06:03] Shazhan: So for me, pediatrics, really came from seeing that. interaction between a physician and a child and a family and really enjoying, observing that. And [00:06:15] the doctor piece really came from my, I guess my ability to perform well in science. And my family’s encouragement to pursue medicine.
[00:06:23] Shazhan: And there’s always. Times along the way where you question that decision. And there was many times for [00:06:30] me but if you ask me today, it’s the best decision I ever made. I’ve had an amazing career doing things that I never could have imagined. So yeah, that’s how I got here.
[00:06:39] Brent: Yeah that’s awesome.
[00:06:40] Brent: You mentioned like a show that you watched as a child and things like that [00:06:45] and there’s all, you never know what inspires you. And so it’s not only heartwarming to hear the inspiration part, but also that you love what you do. You’re so successful at what you do. I’m interested, are there any other moments or mentors also along the way?
[00:06:58] Brent: You mentioned your dad, and your [00:07:00] dad’s your dad’s influence, but you know that like any mentors or others that really shaped you as to the person you are today.
[00:07:07] Shazhan: Yeah, no, very early in my journey in grade 12, I volunteered at a neuroscience lab in [00:07:15] Calgary at the University of Calgary. Dr.
[00:07:16] Shazhan: Navid, ed was my supervisor. I haven’t talked to him in years. I hope he listens to this. He was a huge mentor for me at such a young age. Just in terms of building my confidence was less about medicine and more about what my potential [00:07:30] was and working in that environment.
[00:07:32] Shazhan: Of basics like foundational science was really very cool. And I ended up working there for my summers while I studied for the MCAT and tried to get into med school. So that was a real, I [00:07:45] think, time that and the people in his lab who shaped me, including himself he introduced me to one of my favorite poets, Khalil Gibran, which still is amazing, book of poetry that I turned to for comfort and.
[00:07:59] Shazhan: [00:08:00] Clarity, in my life. And I’m almost 50 now so that was a real big shaping moment. And then, my journey in med school and residency, so many mentors. I did my residency in Winnipeg and. That’s where I fell in love with endocrinology. So to all the [00:08:15] endocrinologists there, Heather, Dean Elizabeth Sellers, who really, Shane Tabac, who was my research supervisor and got me really excited about research.
[00:08:24] Shazhan: That was a real shaping moment for me. I did my fellowship in sick kids in Toronto. [00:08:30] People like Dennis, Dan and Jill Hamilton. Just people. I could go on forever about mentorship and even as I started my career in Vancouver at BC Children’s, really amazing people who shaped me in the beginning.
[00:08:40] Shazhan: Someone who really stands out for me is Bob Peterson, who, was walked [00:08:45] alongside me in my first few years. And again, showed me where my potential was. Really helped me understand to think outside of the box when it comes to health systems and got me excited about system science.
[00:08:56] Shazhan: And yeah, I’ve been very lucky. Today I have [00:09:00] amazing mentors who, have. Really pushed me along this new path of entrepreneurship. And, someone who comes to mind for me right now is Wyeth Wasserman, who’s, an amazing human who is just like, just lets me fly, nudges [00:09:15] me along when I need the help and
[00:09:16] Shazhan: And that’s been amazing. Without mentorship, I would not be where I am today. So
[00:09:20] Brent: I love that, it’s, just as an aside, because you hear about leaders and you hear about mentorship, there’s a difference with the way you’re describing it, someone that’s a leader that’s maybe in a [00:09:30] position that you have to, or work with or that sort of thing.
[00:09:32] Brent: But someone that’s a mentor. A coach, a friend, all those components. And I really like your comment too around, that this lets me fly, realizes my potential or sees that I have potential that you maybe don’t see in yourself, right? Or [00:09:45] haven’t seen that yet. No, that’s great.
[00:09:46] Brent: Just like to switch a little bit to just talk about as a pediatrician and a pediatric endocrinologist, like often connecting, just that connection that you have with the child, with the family caregivers and so on. How do you balance that? And maybe some of your [00:TEN:00] mentors, you can draw on some of that, but, the emotional piece of that, the clinical piece of that sort of thing.
[00:TEN:04] Brent: How do you manage that?
[00:TEN:06] Shazhan: Yeah, I think that, people choose pediatrics because they love that relational aspect to the work, right? You are treating a [00:TEN:15] child, but you’re treating parents or caregivers or guardians, and it’s a complex dynamic that requires a very relational approach.
[00:TEN:27] Shazhan: And that’s what I love. I think people [00:TEN:30] would describe me as very relational. And so I think I manage it with, always rooted in reminding myself and keeping front of mind that the child is my patient. And really [00:TEN:45] staying true to that interaction.
[00:TEN:47] Shazhan: And of course, when, a newborn baby is my patient, my interaction with that baby is very different than when a 15-year-old is my patient.
[00:TEN:54] Brent: Right?
[00:TEN:54] Shazhan: And often, I’m further. Far enough in my career where that newborn is now thirteen, [00:11:00] fourteen, fifteen years old. And so that’s really the gift of pediatrics is to see kids and families grow over time and be there along the way, hopefully supporting and helping not always.
[00:11:13] Shazhan: Sometimes I [00:11:15] don’t I can’t or I am not able to. But, just, being there in an open, empathetic way. The clinical side I think is actually the easier part. Making the medical management decisions is the easier part. [00:11:30] 90% of the time it’s the relational part that really, really requires, it requires thoughtfulness and intentionality. And and I love both parts of it, so I don’t know if that answered. Yeah.
[00:11:44] Brent: Yeah, it totally [00:11:45] answers my question. And so different, I’m assuming from child to child, parent group to parent group, all that, and the emotions that go with that from your side and from their side.
[00:11:53] Shazhan: Yeah. One of the hardest parts is when you have to tell that parent. I’d like to see your child alone today. [00:12:00]
[00:12:00] Ursula: Yep.
[00:12:00] Shazhan: To be honest, ’cause your relationship has been with that parent for so long and again, that’s a moment in time where you have to remind yourself, this child is my patient and what’s best for them today.
[00:12:13] Shazhan: It’s actually best for them to start feeling a [00:12:15] little independent around these appointments. And just navigating those different things is really interesting and different.
[00:12:22] Ursula: It is such a navigation. My person knows to say, this is my person and she’s sitting here for the appointment, so I’m not allowed to be kicked out.
[00:12:29] Ursula: [00:12:30] But I do appreciate and understand it is so important to navigate having the older child and approaching adulthood, take care of themselves. And feel confident to advocate and ask the questions that they want. So I appreciate, and I can hear in your [00:12:45] voice it’s not a simple situation to be working with and treating the child and the family.
[00:12:50] Ursula: It’s not as simple as just the medical side. It’s really a whole system approach in terms of what you’re working on. So thank you for sharing your passion and thanks dad [00:13:00] for telling you to go into medicine. I can tell that was, pivotal moment he called it. ‘Cause you said it was the perfect decision and I’m so happy to hear that.
[00:13:08] Ursula: I’m interested. Your life took an unexpected turn
[00:13:11] Ursula: And one that shifted your perspective around medicine [00:13:15] and treatment of patients. So can you tell us a little bit about what happened to you when all of a sudden you were faced with wearing a patient hat?
[00:13:23] Shazhan: Yeah. It was. A surprise, I’m not gonna lie.
[00:13:27] Shazhan: I was [00:13:30] literally the day before on call with the hospital. I had clinic I was division head at the time doing my leadership stuff. And I wasn’t feeling well, I hadn’t been feeling well for a few days, just headache. And I have a condition that I’ve had for a [00:13:45] number of years where if I get a fever, I have to go to the hospital and avoiding checking my temperature as I always do because I don’t have time to go to the hospital.
[00:13:53] Shazhan: And the next morning I woke up. My husband actually looked at me and said, you don’t look very good. And I was like yeah, I’ve got [00:14:00] clinic this morning. Let me just go see my patients and I swear I’ll go to see the GP right after. And he’s why don’t you take your temperature?
[00:14:06] Shazhan: And I was like, nah. And he’s yeah, why don’t you do that? So I did. And obviously I had a really high temperature. And so in that moment it [00:14:15] was like straight to emerge. That’s where you’re going. And of course I’m like, but I have clinic and every physician goes through this but I gotta see my patients first.
[00:14:24] Shazhan: And it’s you need that person, right? My husband was that person. No, you’re not making the right [00:14:30] choices right now. And anyways, so this was actually, I think, one of the first clinics I’d ever canceled in my career. That late in a, in a morning and went to emerge . Clearly that’s what I needed.
[00:14:40] Shazhan: Anyways, I thought it was gonna be the usual, get some antibiotics and [00:14:45] emerge. Usually they would send me home, bring me back the next day. And that’s what I thought was gonna happen. So my kids at the time, they were young, five and seven I think, and I said, don’t worry guys, I’ll be home by the end of the day.
[00:14:58] Shazhan: And I didn’t come home for a [00:15:00] month, yeah, that was hard. That was hard for them. It happened really fast. I noticed blisters on my skin. I obviously felt awful. I kept asking the doctors, I don’t understand what’s happening. That was about two days later, three days later, I lost my vision.
[00:15:14] Shazhan: [00:15:15] So my cornea had been affected and about day three or four. They made the diagnosis, but by then it had spread. It was late. It was too late, actually. I don’t remember much after that. I [00:15:30] remember the pain. I remember the day I went to the ICU, I was on the ward and I could hear the hustle and bustle in my room.
[00:15:39] Shazhan: I knew things were not going in a good direction. I could hear the panic around [00:15:45] me, bringing nurses in from emerge because the ward nurses could not manage me. Like it was just that kind of and I’ve been on the other side of this, so I know, I knew. I could hear, I couldn’t
[00:15:54] Shazan: see anything, but I could hear everything, which arguably could have been more scary to not see it and just hear [00:16:00] it.
[00:16:00] Ursula: ’cause in your mind you have internal panic you all of a sudden can’t see.
[00:16:05] Shazhan: Yeah, it was crazy. And then I remember moving to the burn unit in the ICU. And that’s when I think the first sort of piece [00:16:15] of my skin came off. And I can’t even tell you the pain. I screamed and I could hear my mom outside my room, like telling me, you’re gonna be okay.
[00:16:25] Shazhan: You’re gonna be okay. And then from there it was like, like a blur. Lots of [00:16:30] meds, lots of morphine, lots of pain. And like maybe TEN days in, I was sick. And my husband came and said you’re so strong and I’m so proud of you. And I said, I just need to sleep.
[00:16:44] Shazhan: I have not [00:16:45] slept in TEN days. Like someone has to let me sleep, I’m not gonna make it. And to have advocates in your life like him and my mom, sorry. It’s all good. Thank you for sharing. I
[00:16:59] Brent: know [00:17:00] like I totally can understand why it’s so emotional for you. And thank you so much for sharing it. I think, we just finished talking about, mentors as to you as a doctor and your successes as a physician, and now you’re a patient, right? And then also [00:17:15] the way you’re describing it, one without a voice. But the importance of your husband, your mom and the medical team that was supporting you and how much those are.
[00:17:24] Brent: But I don’t know if you feel comfortable talking about what did that experience like, teach you that, textbooks can’t teach [00:17:30] you, but the more that you take in, back to your medical practice or even just your daily life,
[00:17:36] Shazhan: yeah. I think you made a really good point about just having no voice and you’re either too sick or, I wasn’t with it [00:17:45] until about, two weeks in. And so the fear and the sense of helplessness for me was the hardest. I’m sure you can tell that I like to be in control and I was not in control.
[00:17:57] Shazhan: And so for me, I was so lucky to [00:18:00] have, not just my family, but I have obviously lots of friends in the medical world who love and care for me and advocated. At that level with that knowledge. And so I wondered [00:18:15] what happens to other people . I have everything
[00:18:17] Brent: that don’t have those advocates.
[00:18:19] Shazhan: Exactly. I have everything around me. I have everything. And, as I started to come to and was more aware of my environment, which took a little while, [00:18:30] I looked around and saw how so many people were alone in that unit and we actually, we got in trouble because so many people were coming to see me and I’m
[00:18:41] Shazhan: critically ill, but the IC was like, you need to stop bringing people in to see [00:18:45] her. Like she’s very sick. Like that was like, the nature of my experience was like the love and the strength of the people around me that gave me strength. And so anyways I think the advocacy piece was really what stood out for me.
[00:18:58] Shazhan: And it’s no one’s [00:19:00] fault. It’s a system issue. And I think that came out for me real strong communication documentation and just a sleep thing, right? When I said I’m not gonna make it if I don’t sleep. I haven’t slept, I just need three hours of straight sleep.
[00:19:14] Shazhan: ’cause I was getting [00:19:15] drugs every hour and I was getting my blood vitals done every hour. Now I’ve ordered vitals every hour, multiple times on my patients without ever knowing what that meant. Ever.
[00:19:27] Brent: Yeah. Or considering that. Yeah. Yeah.
[00:19:29] Shazhan: I [00:19:30] never, ever rethought that order today. I rethink it every time. And so what my husband did was he sat down with the nurses and was like, show me what you’re doing.
[00:19:40] Shazhan: Like why can’t you batch this and this together, and why can’t you put this and this [00:19:45] together so that she can sleep for three hours? And you don’t touch her. You don’t move her. You don’t. And it took that. Kind of advocacy and then, and the medical team being open to okay, no, we see, we understand like she’s suffering.[00:20:00]
[00:20:00] Shazhan: And it was things like that, of course the pain control there were, there needed to be a ton of advocacy around that because, resources are tight in our system and we understand that. But, if I hadn’t had advocacy around my pain control, I will tell you, I wouldn’t be sitting here with you [00:20:15] today.
[00:20:15] Shazhan: The trauma would’ve been too much for me to have functioned in my life. But because I got advocacy around pain control, I’m here today and I’m high functioning and I’m working, and the PTSD is still there. It’s [00:20:30] always there, but I don’t think I would’ve recovered. I don’t, and I can say that with complete confidence that, trauma is real for patients.
[00:20:38] Shazhan: And so these are all things I had no idea about, and these are lessons that I’ve come out with that have stayed with me [00:20:45] around trauma and, coordination and communication and listening. Those nurses sat down, they listened to my husband. Doesn’t always happen, right?
[00:20:56] Shazhan: So those were big things in my journey and then, hope. [00:21:00] How do you hold onto hope in those moments? ‘Cause it really comes and goes, let me tell you. And so how do you build that in? I had a music therapist who sang to me with every dressing change every two days.
[00:21:12] Shazhan: Wow. She would come in my room [00:21:15] with her guitar and her piano. That’s incredible. And she would sing me music that I liked. That is incredible. I didn’t even know that existed.
[00:21:25] Brent: Yeah. I would never think that existed. Yeah.
[00:21:28] Shazhan: Today like funded [00:21:30] by the firefighters Foundation, not by the system.
[00:21:33] Shazhan: A foundation. It was a burn unit. Firefighters were like, we’d like to contribute to this, and, it was a gift, more than a gift. It was everything. If she wasn’t in my [00:21:45] room during those moments ? honestly, and it was beautiful and so I learned these things, that, yes, we come in as doctors and we write the orders and we decide on the medical treatment.
[00:21:56] Shazhan: But the heroes, and I’m not saying the doctors are not the heroes too, but the heroes of the [00:22:00] story are the people around you who, my nurses were my heroes. They made me feel human. I didn’t feel human. And at night there was one nurse, she I’ll never forget her. She would wash my hair.
[00:22:13] Shazhan: I just wanted my hair [00:22:15] washed, and she would clean the blisters on my face and my ears, and she would just talk to me. About my life. My kids, we talk about their school, we talk about what I liked. She noticed a picture in my room and noticed my purse and asked me about what I like that [00:22:30] kind of stuff.
[00:22:30] Shazhan: And it was just, it was, she made me feel human again. And so what I walked out with, I remember a colleague asked me, what was the most important thing to you in those moments? And I said, kindness. It was kindness. It wasn’t, [00:22:45] I didn’t care about what was infusing to my veins. Honestly, and I’m a doctor, I didn’t ask.
[00:22:51] Shazhan: It was those moments of kindness that actually saved my life. Kindness, obviously from my family, but kindness from the staff. People were cheering me [00:23:00] on the first time I walked. The whole unit cheered for me. Something as simple as walking. Something I thought was as simple as walking wasn’t simple anymore.
[00:23:TEN] Shazhan: So yeah, it was that kind of stuff I walked away with that, really changed me, [00:23:15] transformed my whole being.
[00:23:17] Brent: Thank you so much for sharing. And because you just finished talking about they’re not just lessons that move to you, for the rest of your career, but as you said, they changed you and had such a dramatic impact [00:23:30] on you as a person who you are.
[00:23:31] Brent: And I would. Maybe you can talk about it for a sec too, but the impact on your husband as an advocate, like the impact that it had on him and on your mom and your friends and your family and so on. But I’m sure they’ve talked about it with you as [00:23:45] well ’cause it’s equally traumatizing for them, but they also, at the same time, it sounds like they likely felt that they were part of the journey with you and how can they help and they, and move help you get better?
[00:23:56] Shazhan: Hundred percent. A hundred percent. The trauma is real [00:24:00] for caregivers as well. I think that. I’ll tell you the moments for them that I noticed made a big difference. There was one doctor, a rheumatologist who was part of my care in the early days, and [00:24:15] he came in every day and the first thing he did was introduce himself to every family member in my room.
[00:24:21] Shazhan: Ask who they are and what do you mean to her? They’re seen and heard. My cousin, my mom, my husband, to me that was really [00:24:30] special for them. They were seen, they were acknowledged. They were heard. He was a very special physician who I learned a lot from. As a colleague to watch his bedside manner and the way that he acknowledged my family [00:24:45] and respected them.
[00:24:46] Shazhan: I think there was one moment where he told the resident, a resident might have dismissed one of my husband’s comments, and he actually said to his resident this man here is the smartest guy in the room. He knows his wife the best, and he knows [00:25:00] everything that’s happening to her right now.
[00:25:01] Shazhan: Let’s give him a second to tell us what he thinks, and that was a real empowering moment for my husband. ’cause it’s okay, you see me and you hear me and I do know a lot ’cause I’ve just read everything about this disease and I know [00:25:15] her. And so like that kind of stuff, like I think that stuff really mattered to them.
[00:25:19] Shazhan: It’s not easy to advocate for someone you love. In a hospital situation or in chronic disease management, it’s not easy. And so what I’ve learned as a clinician is, I hear and I’ve [00:25:30] probably said it before, you know that difficult family, that difficult patient. I never use that language ever.
[00:25:36] Shazhan: And when I hear it, I ask people not to use it because at the end of the day, they are advocating, and maybe the [00:25:45] how is not landing well but their intention . Because they love this person. They want the best for this person. And so to remind ourselves as clinicians yeah, these moments can be very difficult.
[00:25:56] Shazhan: I’ve now been on both sides of it. I understand it’s hard to be that [00:26:00] on the side of it, receiving it as a clinician, but remind ourselves, root ourselves in the why. It’s ’cause they love this person. So to me that was a really big lesson.
[00:26:11] Ursula: Shazhan, thank you for sharing. What a life-changing experience [00:26:15] everything that you went through, your recognition of everything your family went through as a caregiver.
[00:26:19] Ursula: You mentioned at times, and I’ve been there as well, there’s too many people “air quotes” in the room. That’s good and bad ’cause you want them there for the emotional sport, but understandable that carries risks and [00:26:30] there’s challenges for the healthcare professionals that are managing. And I hear this. I can hear in your voice, this really changed how you look at things.
[00:26:36] Ursula: And I can understand and personally appreciate the stacking of appointments ’cause someone’s just falling asleep and that’s when they’re coming in for the vitals [00:26:45] which we want, but can we stack it? And so there’ve been changes that sounds like you’ve made in your own practice to reflect that patient experience.
[00:26:52] Ursula: So you mentioned you were there for about a month in the hospital and you got better, you were [00:27:00] lucky things took a turn. And take us back to that day. You knew you were going home. What was running through your mind?
[00:27:05] Shazhan: Gosh, you know what, I didn’t know I was going home that day. I don’t think that was anyone’s plan.
[00:27:11] Shazhan: I still had my NG tube in. I was, and [00:27:15] I, wow. I had finally gotten to the ward. I’d been on the ward for a few days and there was so much confusion about my dressing changes. One, team thought I needed to still get dressing changes. And actually, funny enough, my husband ran into the plastic [00:27:30] surgery fellow in the elevator and said, Hey, can you come by and see her?
[00:27:34] Shazhan: Because everyone’s confused and she just wants to go home. I wanna be home before Halloween. That was my big thing. And the plastic surgeon came and said, oh, she doesn’t need [00:27:45] dressing changes. Her skin has grown under the dead skin. And then he just showed us and I was like, and my pain, I wasn’t taking morphine like I was taking, to wean off, but I wasn’t needing any, as much for pain control.
[00:27:56] Shazhan: Anyways, long story short, that day I was like, [00:28:00] oh. And then I just started crying and my very good friend who is also a clinician, came to see me and she said, you just need to come home. You need to come home. That’s it. And we lived, we shared side by side duplexes. So she was like my neighbor. [00:28:15] And so we said, she said to the doctor, let her come home.
[00:28:18] Shazhan: I’ll watch her so closely, I promise you. And so I went home that day. I didn’t even know I was going home. My kids didn’t even know I was coming home.
[00:28:24] Brent: They must’ve been thrilled. Yeah, they must’ve been thrilled.
[00:28:27] Shazhan: Yeah. It was crazy. And then, my friend [00:28:30] almost sent me back to the hospital the next day and I was like, please don’t, I promise.
[00:28:35] Shazhan: I had to promise people I would eat. I had to promise I would do everything they told me to. I just wanted to go home. So it wasn’t like a traditional discharge, it [00:28:45] was like a, she’s got enough support and expertise around her, we’ll take a risk here and let her go home. And I was able to stay at home, but it was hard.
[00:28:54] Shazhan: It was hard for the first couple weeks.
[00:28:56] Brent: Yeah, sure.
[00:28:57] Ursula: I bet. Looking back, would you have changed [00:29:00] anything during that acute phase that you remember where you’re like, wow, if I, this is what I would advocate for someone else if they were going through this right now? Sounds like you had amazing healthcare professionals and you flagged that the nurses really listened
[00:29:14] Ursula: [00:29:15] to you and that made you feel safe and supported and your family was really there. Is that what made a difference? And is there anything else, that you would like others to know as to things to change or things that helped?
[00:29:28] Shazhan: I think that, yes, all [00:29:30] those things were amazing. Although I did also experience the gaps in the system and my family experienced that too.
[00:29:36] Shazhan: And there’s a lot of gaps. It uncovers the gaps that we don’t even know as a clinical team or experience by patients. And so the [00:29:45] work that I do today is really inspired by my, understanding of the system issues that exist around, communication is broken, particularly communication between clinicians and [00:30:00] patients.
[00:30:01] Shazhan: And I don’t just mean say hi to each other. Be transparent and open and honest and listen. The thing that I learned when I came out was time. My time as a physician is gold to patients. [00:30:15] ’cause when I was a patient, their time was gold to me. And when someone came in and out of my room and didn’t communicate with me and didn’t give me like the lowdown of what was happening to me, I was so frustrated.
[00:30:28] Shazhan: And so now I know [00:30:30] time is gold. Communication is so critical. Empathy. Empathy, the comments and statements and dismissals that happened from the healthcare team to me and my family [00:30:45] that had no empathy. Stay with you forever. They scar you. And I know we don’t expect for perfection, right?
[00:30:53] Shazhan: I always say even to my own patients, listen, clinicians are human too. We are not perfect people. We have bad days too, [00:31:00] right? And things come out sometimes and they don’t land well. And our intention is it comes from a good place, but our impact was not. And I accept that. And so I don’t think I expect perfection, but I think there’s definitely room for [00:31:15] improvement around those things.
[00:31:16] Shazhan: And so I think that’s really where I’m and data, give your patients the information they need, to feel empowered and part of the conversation, collaboration, those kinds of things. I think I wanna be [00:31:30] part of changing.
[00:31:31] Ursula: Speaking of changing, you pivoted after being a physician.
[00:31:36] Ursula: You had a significant life experience that changed you as an individual and as a physician, and you ended up building a company. Tell [00:31:45] us how that happened. How did that come to be that you lead up and created Haibu Health?
[00:31:51] Shazhan: Yeah, it’s interesting ’cause I had been pulled into this digital health project actually before I got sick.
[00:31:57] Shazhan: And it was, it was a, someone [00:32:00] knocking on my door. It was a mentor, Wyeth, who I mentioned earlier who asked me to consider being a principal investigator on the research and supporting the research part of this work. And I would never have. It was, ’cause it was Wyeth. That, I was like, sure.
[00:32:14] Shazhan: [00:32:15] And so I got Pulled in before I got sick. But when I came back from, being away for medical reasons, I think I just came in with a new perspective of we need to innovate this system. And there are so many fires. That the public [00:32:30] sector has to deal with, and that is, there’s a million reasons for that we don’t need to get into, but innovation is not, and maybe cannot be on their radar right now.
[00:32:41] Shazhan: It should be, but. I can see why it’s not. [00:32:45] And so I did this project as the principal investigator worked with other industry partners. It’s my first time working with private sector med tech companies. I really enjoyed it and I got the bug. Like I saw the potential, I [00:33:00] saw the, that wow, technology can actually address these issues, create more connection, communication, allow for visualization of data, collaboration between teams.
[00:33:12] Shazhan: Like I just saw all this like [00:33:15] possibility and and so that got me excited. So I continued the work and I guess. Maybe I’ve never thought of it this way, but you’ve opened this thought for me is maybe my experience is what motivated me to take more of a [00:33:30] leadership role in this work.
[00:33:31] Shazhan: ’cause I hadn’t planned to, I planned to do the research and be done and be like, that was fun. And instead I ended up really taking the wheel of this work. And from that, I got a big grant from the [00:33:45] CIR and breakthrough T1D. Very grateful for the funding that they’ve provided.
[00:33:50] Shazhan: But know that to sustain a technology like this that we’ve built the public system won’t do it and they can’t do it. It’s expensive, technology’s expensive, and [00:34:00] so really had to reflect and do a lot of talking to other people, both physician founders, clinician founders, but also just people in private sector who run purpose-driven companies and and spun off a company [00:34:15] to really sustain the product so that it can be in the hands of as many patients, children, and youth, adults living with diabetes as possible.
[00:34:23] Shazhan: And we can only do that through partnership between private and public sector. I’m convinced, like I wasn’t [00:34:30] five years ago, but you asked me today, I’m convinced that we will transform if we partner and we take this barrier down that we’ve put up over so many years and really start to think about how we can work together.
[00:34:43] Shazhan: And so [00:34:45] that’s what inspired me. I love the work. I love data. It’s centered on data, so it still aligns with. All the research I’ve done for the last 15 years, but it takes it to another level. It’s where data touches patient care. I never [00:35:00] thought we could ever get there, but that’s what we’re doing, so that’s really exciting for me. Fantastic.
[00:35:06] Brent: When you talk about innovation, just innovation overall, and you don’t necessarily think of the public healthcare system and innovation, even though as you [00:35:15] said it should be, but it doesn’t really mesh because at least I hear this all the time for not being a healthcare provider, but being involved in the healthcare system to a certain extent, that, dealing with the fire of the day, here are the acute issues that are broader [00:35:30] systemwide. And it’s really, it’s people that are in the system or adjoin to the system that say, here’s an innovation that can move us forward, whether it’s in digital health, whether it’s whatever that innovation is.
[00:35:41] Brent: And I also like what you talked about just in terms of [00:35:45] partnerships, that it can’t be one person. ’cause the insights you have as a clinician and a patient, but like a clinician. Perspective, a patient perspective really can say, here’s where the challenge is. And then, whether it’s funding or people that have the expertise, in digital health or medical [00:36:00] engineering, whatever the situation is.
[00:36:01] Brent: But, yeah, I’m just I think that’s something certainly that’s seen right across the country and we have so many great, just within Canada, let alone globally innovators, people that are innovators or think the way you do. But I guess that’s kinda my [00:36:15] question too, is just around how does, and you’ve answered a little bit around.
[00:36:18] Brent: Your experience as a doctor and as a former patient shape, the way you build technology for others, or the next idea, and those ideas and the next, collaboration that goes with that.
[00:36:28] Shazhan: Yeah, I think [00:36:30] purpose becomes the most important thing for any innovator who is trying to.
[00:36:37] Shazhan: Drive something bigger than themselves. I’m a real Simon Sinek fan. I talk about just cause all the time. And in the last few [00:36:45] years I have a amazing coach who has worked with me for a number of years, even before I was sick. She helped me get through my recovery. But she really pushed me to define your purpose, and so I’ve done that in the last couple years. I’ve defined my [00:37:00] purpose and my not my professional purpose, not my purpose for Haibu Health, or as a pediatric endocrinologist, or as a clinician scientist, what’s my purpose as a human being, and, and I think as an innovator, once you have that and you’re anchored in [00:37:15] that then it just comes, right?
[00:37:17] Shazhan: Your decisions are where you decide to go. Like for me to make a decision to start a company, that was a huge decision for me. I’m still, destabilized by it. And uncomfortable by it. But it, that’s good for me. That’s, [00:37:30] that I’ve learned that this discomfort is very good for me.
[00:37:32] Shazhan: But it was anchored in my purpose, right? My purpose is to be the champion to make people and ideas thrive. That’s what I want. It’s people and ideas. [00:37:45] That’s where my heart is. And I think as an innovator, I think it’s important to define that because it helps you keep your pathway on that.
[00:37:52] Shazhan: And it could go in so many different directions if you have a general purpose statement. But it keeps you anchored in what you believe in. And then I [00:38:00] believe that’s what brings success. That’s what brings for me success will be that this technology is used by as many. Kids living with diabetes is possible and it benefits them.
[00:38:12] Shazhan: That’s what success looks like for me. It could look [00:38:15] some, like something totally different for another innovator. So yeah, I think it’s been a really interesting journey because that purpose statement really all came together from all my experiences.
[00:38:26] Brent: Oh, fantastic.
[00:38:28] Ursula: Shazhan, that’s incredible. And the [00:38:30] experiences that you’ve had really bring together all three dimensions.
[00:38:33] Ursula: The doctor, the patient, certainly talks about the importance of early intervention, treatment care, communication, empathy, and the innovator. And it’s really into one mission, [00:38:45] transforming care by seeing the whole person. I want to thank you for your time today. We just wanna end on a fun note after a very serious and important conversation – interested in what are you looking forward to most this fall, and do you have a next upcoming fabulous trip?[00:39:00]
[00:39:00] Shazhan: Oh gosh. I just finished a fabulous trip, Oh, what was that? Seven weeks in Europe with my fam. Wow. Yeah. Five weeks with my family, my kids, my husband, and met up with some friends and to me that was like, I’m on [00:39:15] sabbatical right now, leaning into being a CEO founder of Haibu Health, and so the flexibility I get.
[00:39:22] Shazhan: Through a sabbatical and not seeing patients right now, which I miss terribly. But the positive of that is the flexibility. And so [00:39:30] for me, this was a really important moment in my journey because not only did I get that time with my kids because there was a moment when I was in the ICU where I thought that I was done, that was it.
[00:39:41] Shazhan: That was all I got. And so to spend five weeks [00:39:45] with them. And with that, like real quality time was a gift. And then I played tennis for five days in Myorca
[00:39:51] Brent: Oh, that’s amazing.
[00:39:53] Shazhan: That was a moment of proving myself that my body has healed that I’m good. I’m back where I [00:40:00] was.
[00:40:00] Shazhan: I’m strong. I think my physical strength and my mental health are very connected. And so to get my physical strength back was actually a big lift. And so that five days playing tennis for four hours a day was my moment to say, okay, I’m back. I’m [00:40:15] good. And these things come with gifts, and it was an amazing trip.
[00:40:18] Shazhan: It was, we saw the most amazing things. I’ll tell you, everybody has to go to a place called Matera in Italy. It is the most special place I’ve ever seen. I won’t tell you more, but it’s not really on the [00:40:30] like, common list of places to go. So it’s my little pearl that I’ll end with is go visit Matera.
[00:40:36] Brent: I love that because just planning a trip for next summer or next spring, so go to Italy. We’ll chat more about that for sure.
[00:40:44] Ursula: Putting on [00:40:45] your list.
[00:40:45] Brent: Yeah, absolutely. Thank you so much for your time and for sharing and like the passion, the insight, yeah, just being you. I look forward to meeting you in person and yeah, thank you so much for your time today.
[00:40:57] Brent: Really appreciate it. And Ursula, I don’t know if you have any final [00:41:00] thoughts.
[00:41:00] Ursula: I just wanted to say a huge heartfelt thank you. So grateful and appreciative for you to share your story and go back there. And I know it got emotional. It did for me. I was tearing up as you were talking from your experience.
[00:41:11] Ursula: And it makes me think of stuff that I’ve been through too. That’s [00:41:15] different. But thank you for sharing that. I really appreciate it and I’m really excited to help share your story broader. So more time for us coming. And thank you for today.
[00:41:23] Shazhan: Oh, thank you. For today.
[00:41:26] Ursula: Thanks for tuning into Amplify, a podcast powered by [00:41:30] Patient Voice partners.
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