From tragedy to hope — inspired couple invests in research
Category: Creating Tomorrow
Published: September 2022
Subhas “Sam” and Uttra Bhargava have been giving back to their community since they first met 60 years ago — and that giving took on new meaning after a series of personal losses.
Together, they cared for Sam’s father and mother who suffered from Parkinson’s and Alzheimer’s respectively. They also saw their oldest daughter, Suruchi, left paralyzed from the neck down after she was hit by a drunk driver. Sadly, all three family members passed away from their deteriorating conditions. These tragedies ushered Sam and Uttra into the world of healthcare and research, inspiring them to step up for others facing similar challenges.
“We knew we needed to do something so nobody would suffer as we did,” says Uttra.
“We knew we needed to do something so nobody would suffer as we did.”
– Uttra Bhargava
Uttra and Sam Bhargava at the unveiling of the Bhargava Neurosciences Clinic.
Volunteers and philanthropists for decades, the Bhargavas are shining a light on the research being conducted at The Ottawa Hospital — forming a close bond with Dr. Michael Schlossmacher, Director of the Neuroscience Program and clinician scientist working to improve the lives of those with neurodegenerative diseases.
“Research is the only thing that provides hope and innovation.”
– Sam Bhargava
“Dr. Schlossmacher is a great scientist and a great man…I admire him so much,” says Uttra, as she and her husband speak about the importance of keeping some of the world’s greatest research minds in Ottawa. “There’s so much talent,” adds Sam. “They can achieve anything.”
This belief has inspired Sam and Uttra to support The Ottawa Hospital’s research and care for patients suffering from brain and spinal cord damage. They hope their support will help lead to cures for some of the most devastating conditions and injuries — but they know it won’t happen overnight. They call their support a down payment on their dream for a cure. “Research is the only thing that provides hope and innovation,” says Sam. “You just don’t give up.”
The Bhargavas give generously — and consider themselves fortunate to be able to do so. In 2012, they donated $1 million to establish The Bhargava Research Chair in Neurodegeneration at The Ottawa Hospital — Dr. Schlossmacher is the current Chair holder, and Sam is also the Founding Chair of the Parkinson’s Research Consortium. In honour of their oldest daughter, they also established the Suruchi Bhargava Chair in Spinal Cord Research, which supports neurosurgeon Dr. Eve Tsai’s research.
Uttra and Sam Bhargava with Dr. Michael Schlossmacher.
Most recently, they donated $500,000 to the Campaign to Create Tomorrow — a Campaign that will not only support the construction of the New Campus Development, which will be home to a new neuroscience institute, but will also take research to unprecedented heights.
“If you want to help the community, you have to put the money into research. Unless we try, it will not happen.”
– Uttra Bhargava
In addition to their support of The Ottawa Hospital, Sam and Uttra’s philanthropy has extended to many other community initiatives, such as early literacy programs, hearing screening programs for pre-schoolers, and they were instrumental in the Parliamentary declaration of National Child Day in Canada. Today, along with their work supporting research at The Ottawa Hospital, they are pushing to make changes in how we care for our aging population. With the help of a team of early supporters, they are mobilizing at the grassroots level to petition the House of Commons to put more focus on the health and well being of seniors and those living with disabilities. Sam and Uttra believe it is through research and innovation that we can improve the quality of life for all Canadians.
As business and community leaders, the Bhargavas are using their voices to lift up those around them — many of whom they will never even meet. They are working to shield others from the tragedies they suffered — through financial support and by giving their time and energy to the causes that personally affected them. “We want to give the money,” says Uttra, “and at the same time, we want to work with the community.”
“And if you want to help the community, you have to put the money into research. Unless we try, it will not happen.”
Uttra and Sam Bhargava with Dr. Eve Tsai.
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
Community-minded couple turn their gratitude into action
Tony Sottile and Barbara Robertson make their largest philanthropic gift by donating $2 million to the Campaign to Create Tomorrow
Some people have a knack for recognizing a big moment. An insight and a confidence to take action when such a moment arises. Tony Sottile and Barbara Robertson are two of those people — humble, hard-working, and keenly able to recognize an important project when they see it.
Tony’s family arrived in Canada in 1966 from San Martino in Pensilis, Italy, and his parents, Giuseppe and Tina, worked hard to build a new life in Ottawa. They ran Kanata Cleaners for the next three decades, instilling the value and reward of hard work in their children. With a mechanical engineering degree under his belt, Tony set off on his own path, and in 2002, he became the President of Modern Niagara, then CEO in 2004 — a position he held until his retirement in 2016.
Despite his success, or perhaps because of it, Tony has remained humble, committed to giving back to the community. He and Barbara have been long-time supporters of many charitable causes in Ottawa, rallying others to join them. Barbara, a retired teacher, volunteers weekly at the Shepherds of Good Hope and Ronald McDonald House, while Tony serves on The Ottawa Hospital’s Board of Governors. These are just a few examples of the many ways they support the health of our community.
Their recent gift of $2 million to the Campaign to Create Tomorrow demonstrates a deep gratitude to the city they feel has given them so much. They view their gift as an investment in the creation of a global healthcare hub and educational facility — a project that will have an impact on the economy that is without parallel.
The Campaign to Create Tomorrow sets in motion a vision to transform how the world delivers healthcare — by building the most technologically advanced hospital in Canada and taking groundbreaking research and innovation to unprecedented heights.
Tony Sottile and Barbara Robertson made a major donation to the Campaign to Create Tomorrow.
Thank you, Tony and Barbara, for your inspirational generosity and your commitment to our community and our hospital.
About the Campaign to Create Tomorrow
The Campaign to Create Tomorrow is the largest fundraising campaign in our region’s history. It will help fulfil the most ambitious vision ever for the future of The Ottawa Hospital, focused on four critical pillars.
See how we’ll become the most technologically advanced hospital in the country, using the latest tools to provide the right care in the right space with the right provider.
Through our unique collaborative model of clinicians and researchers working side-by-side, we will bring groundbreaking discoveries to patients in Ottawa — and around the world.
Growing up in Mumbai, India, Dr. Pradeep Merchant dreamed of becoming a doctor. His father’s youngest brother was a physician, and Dr. Merchant saw him to be a role model — one who helped chart his path for the future.
That path saw Dr. Merchant immigrate to Canada in the mid 80s, where he enrolled at Queen’s University to study pediatrics. A super-specialty in neonatology captured his interest and took him to SickKids in Toronto, where he finished his training. But he was soon enticed to come to The Ottawa Hospital, and his interest in a research fellowship solidified that decision — that was 30 years ago.
Ottawa is where Dr. Merchant and his wife, Anita, would call home and raise their family. For the past 25 years, Dr. Merchant has been the Site Chief of the neonatology division at Civic Campus of our hospital, where he’s dedicated himself to caring for our tiniest and most vulnerable patients. He has been their voice — always championing for the latest technology and tools to care for pre-mature babies and their mothers.
Dr. Pradeep and Mrs. Anita Merchant
“We’ve done so well with an almost 100-year-old building at the Civic Campus serving the population — you can just imagine what the New Campus Development will mean.”
– Dr. Pradeep Merchant
That dedication includes making our hospital the best it can be. For Dr. Merchant, that means giving back by volunteering on the Board of Directors of The Ottawa Hospital Foundation, and most recently, as a Campaign Executive for the Campaign to Create Tomorrow.
In addition to this latest role, it was important to both him and Anita to support the Campaign with a significant donation — and they hope it will inspire others to give as well. That’s why they’ve committed to matching the contributions of new monthly donors until November 15th, for up to $50,000.
They believe the Campaign, which focuses on taking research to unprecedented heights and supporting the construction of the New Campus Development on Carling Avenue, will be a game changer for the city. “We’ve done so well with an almost 100-year-old building at the Civic Campus serving the population — you can just imagine what the New Campus Development will mean. It will be an absolute marvel of engineering. So, when you look at a building of that stature, not only are we going to provide the best possible care, but what excites me is we are going to attract the best physicians from around the world,” he says.
Dr. Merchant doesn’t shy away from sharing that message with others in our community — including the Indo-Canadian community, with whom he has worked closely over the years. “Philanthropy starts from within and at home. So, when people see I’m not just coming and talking, but I’m doing what I can do to help, I hope it inspires them to want to do what they can to help as well. Because when you have amazing, transformational, cutting-edge healthcare within our city, it benefits everybody, not just a few people.”
It’s the people of our city and their future that truly motivates Dr. Merchant to be a part of this important campaign. “While my career is in its twilight years, I’m as excited as when I started at this hospital in 1992, because this is just a phenomenal opportunity for us to contribute or be part of this entire movement, and to deliver the very best healthcare to the community for the next 100 years.”
“Philanthropy starts from within and at home. So, when people see I’m not just coming and talking, but I’m doing what I can do to help, I hope it inspires them to want to do what they can to help as well.”
– Dr. Pradeep Merchant
Dr. Merchant’s philanthropy and tireless efforts to give back over the past several decades are not lost on anyone. He received one of the highest honours when he was awarded the Order of Canada in 2021. “Canada has given me so much and to get the call from the Governor General’s office, even today, chokes me up. I’m humbled and honoured. It’s not something I ever anticipated or expected. I thank not only our country but our society for making me what I am today.”
Categories: Donors
Published: September 2022
When Geneviève Bétournay reflects on the past decade, she thinks about the adversity she has overcome. As the owner of the Art House, a coffee house/art gallery, she’s endured keeping her business alive during the pandemic. However, an even bigger challenge was her diagnosis of multiple sclerosis (MS) in 2010. Today, thanks to a life-changing stem cell transplant at The Ottawa Hospital, she has a whole new perspective on the possibilities that lie ahead for her.
Geneviève is no stranger to adapting to change. She was in her early 20s and going to university when she started to have issues with her vision. Especially during stressful times, her vision would become blurry, but she didn’t associate it with anything more serious. That changed when she was 23 and living in Japan — new symptoms emerged. “I had more issues with my vision. It was getting worse and that was scary. Also, my foot would drop — it would drag when I tried to move it and there were other issues related to movement,” recalls Geneviève.
Genevieve Betournay was treated for multiple sclerosis at The Ottawa Hospital.
News of MS diagnosis hits hard
When she returned home from Japan, she started to seek answers, but it was some time before anyone would connect the dots and uncover the problem. “Ultimately, it was the vision issues that ended up getting me to see a neurologist because basically, my optometrist was able to get my prescription right, but my vision was still blurred,” explains Geneviève.
It was Geneviève’s neuro-ophthalmologist that first revealed the severity of what she was facing. Early indications suggested her symptoms could be the result of a brain tumour or MS. “I remember that day sitting in the office. I was extremely emotional because I didn’t know what that meant to be honest. When you grow up, in our society as it is, chronic illness is not something that’s talked about all that often.”
An MRI finally provided Geneviève with answers. But along with those answers came the shock of an MS diagnosis.
“What is life with MS? What would life even look like? It just sounded scary. I didn’t know what was going to happen to me.”
MS is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation, and balance. For Geneviève, there were so many unknowns and even more questions. “What is life with MS? What would life even look like? It just sounded scary. I didn’t know what was going to happen to me,” she says.
1
Fatigue, cognitive disruption, mood changes
2
Vision issues such as vision loss, blurred vision, and double vision
3
Difficulty with speech and swallowing
4
Incontinence and digestive problems
5
Difficulty with hand-eye coordination and numbness/tingling in hands
6
Sexual dysfunction
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Loss of power in a limb or numbness
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Walking difficulties and balance problems
Effects of MS on the body
Fatigue, cognitive disruption, mood changes
Vision issues such as vision loss, blurred vision, and double vision
Difficulty with speech and swallowing
Incontinence and digestive problems
Difficulty with hand-eye coordination and numbness/tingling in hands
Sexual dysfunction
Loss of power in a limb or numbness
Walking difficulties and balance problems
Groundbreaking MS treatment pioneered in Ottawa
Once Geneviève and her family processed the news of her diagnosis, she learned everything she could about the illness. A family friend, who happens to be a nurse, had heard a lot about Dr. Mark Freedman and his transformational MS stem cell transplant research in collaboration with Dr. Harold Atkins and encouraged Geneviève to get in touch with The Ottawa Hospital’s MS Clinic. Meeting Dr. Freedman was a pivotal day that would shed new light on her future. “I see it as one of those very lucky life-changing moments when I made that call,” explains Geneviève.
Twenty-four years ago, many were skeptical when Drs. Atkins and Freedman first proposed the idea of using stem cells to reprogram the immune system to halt the progression of MS. Today, they are known for pioneering this groundbreaking treatment which is now being used in many countries around the world. In fact, it was serendipity that led Dr. Atkins, a hematologist, and Dr. Freedman, a neurologist, to meet while they were working on a different project. The two started to discuss stem cell transplants and that would ultimately lead to the transformation of MS treatment.
While this was a time of uncertainty for Geneviève, she felt she was in the right hands to handle the complexity of her case. “Dr. Freedman was very kind from the beginning. It was very comforting to know that there were multiple treatment options if something didn’t work.”
Twenty-four years ago, Drs. Mark Freedman and Harold Atkins proposed the idea of using stem cells to reprogram the immune system to halt the progression of MS.
Initially, Geneviève received the first line of treatment for a year that included injections every two days; however, it didn’t provide positive results. Next in line was a form of chemotherapy that targeted her immune cells. She remained on that treatment for two years, but once again, the results didn’t have the impact her medical team had hoped for, so, in January 2013, Dr. Freedman recommended the MS stem cell transplant.
MS symptoms were progressing quickly
At this point, Geneviève’s MS was progressing quickly. Both of her eyes were now affected, and increasingly her mobility was impacted. “I felt numbness below the waist. It was very difficult for me to walk unassisted. I would need something to hold on to — either a person or a wall or something like that. There were also issues with muscle spasms and dizziness,” explains Geneviève.
Geneviève in 2013, receiving a stem cell transplant to treat multiple sclerosis.
Headaches were also a challenge, and life was becoming more difficult for this young woman who was working on her Master’s degree at UOttawa. Her degree was in organic chemistry, and lab work was challenging because of blind spots in her vision and a lack of dexterity. When it came time to decide whether to participate in the transplant, she explains there was no decision to make. “I knew about this treatment from the beginning. It was always in the back of my mind. I had already processed it. I do remember being sad that nothing else had worked and I had to do this or else my condition would continue to go downhill rapidly. It gave me hope but it was a very emotional day,” recalls Geneviève.
“I felt numbness below the waist. It was very difficult for me to walk unassisted. I would need something to hold on to.”
She remembers the compassionate support she received from Dr. Freedman when it was time to consider the transplant. He explained it would be one of the hardest decisions she’d ever make and encouraged her to take the time to make sure it was right for her.
Geneviève learned that she could become infertile because of the procedure, so in the few months before her transplant, she had some of her eggs harvested and she also received a shot that could allow her eggs to go into “hiding” during the treatment.
Time for the MS stem cell transplant
In July 2013, Geneviève received her stem cell transplant. The process begins with purifying and freezing the patient’s stem cells which will later be “cleaned” in the lab. The next step is a strong chemotherapy treatment to destroy the patient’s immune system. The final step is the transplant of the clean stem cells back into the patient — that’s when a new immune system starts to develop.
It’s not an easy process, but Geneviève was focused on what the result might give her. “Mentally and physically, it was challenging, but to be honest, I’m a different person today because I went through that.”
See the journey stem cells take during autologous stem cell transplantation.
How did a stem cell transplant halt MS?
Geneviève underwent an immunoablation and autologous hematopoietic stem cell transplantation (IAHST) to treat her MS. It’s a groundbreaking treatment pioneered by researchers at The Ottawa Hospital for patients with certain forms of multiple sclerosis. It involves harvesting and treating a patient’s own stem cells to remove traces of disease, eliminating their immune system, and then creating a new one using their newly “cleaned” stem cells. IAHSCT is currently being used to treat two other rare autoimmune disorders: myasthenia gravis and stiff person syndrome.
“Those moments where something happened that I wasn’t able to do before – it’s like pure euphoria. It was joy. It was gratitude for something that you never thought you’d ever feel again.”
Geneviève says she was in the hospital for eight days before she was able to go home because she didn’t have any major infections or require constant monitoring. Also at that point, her cell counts started to go back up — her new immune system was starting to grow. She returned to the hospital as an out-patient for several months.
The next step was to determine the impact the transplant would have on her overall health. It took between eight and 12 months for Geneviève to recover, and then she started to notice tiny improvements. “That’s when I first noticed I could do something that I couldn’t do before, or I had lost the ability to do. The first thing I noticed was I could lift my right leg, because my right side was more affected than the left.”
As Geneviève saw these small improvements begin, she tried to temper her expectations. She didn’t want to let her hopes get too high, but she admits sometimes she couldn’t resist. “Those moments where something happened that I wasn’t able to do before — it was like pure euphoria. It was a joy. It was gratitude for something that I never thought I’d ever feel again.”
Was it all worth it?
Over the past decade, Geneviève has seen every single symptom get better. From lifting a single toe to moving a foot to being able to jump again, and then walking several kilometres without tripping and falling to the ground — these are big milestones on her road to recovery. The signs of MS are disappearing. “To date, it would seem I have not had any new relapses. No new disease activity. My vision improved, and I continue to recover, albeit very slowly as it takes a while to heal.”
When Geneviève reflects on how far she’s come, had she not undergone the stem cell transplant, she believes she would likely be in a wheelchair today. “It was 100% worth it. Just the fact that I can move blows my mind. I have a great deal of gratitude for the doctors and everything the hospital had done for me.”
And today, with only a slight limp, she walks up the steps into the Art House and appreciates each moment she has to celebrate the creative artists in our city and transformational treatment she received at our hospital. “It’s priceless what I have gained. Aside from developing MS, nothing has had a more extensive impact on my life than undergoing this stem cell treatment. Simply put, it saved my life, or perhaps you could say it gave me a second one.”
Before her stem cell transplant, Geneviève had difficulty walking unassisted.
“It’s priceless what I have gained. Aside from developing MS, nothing has had a more extensive impact on my life than undergoing this stem cell treatment.”
Listen to Geneviève share her journey with MS in episode 66 of Pulse Podcast.
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Categories: Clinical Trials, Neuro, Patient Care, Patient Care, Patient Care, Patient Care, Stem Cell
Transformative gift is deeply personal for the Jones family
The Jones Family Foundation donates $10 million to the Campaign to Create Tomorrow and continues to shine a light on the need for kidney research and organ donations.
In the business world, just as in the world of healthcare, numbers matter. Customers served and problems resolved. Patients seen and lives saved. But numbers only tell part of the story.
That’s certainly been the experience for the Jones family. Their journey with The Ottawa Hospital has involved some critical numbers: 33 — the years June Jones has lived with IgA nephropathy, a form of kidney disease; 10 — the years she’s depended on lifesaving dialysis; 8 — the hours per day she’s frequently connected to a dialysis machine.
But the number that matters most is 1. June needs one new kidney, and the Jones family has one fervent hope for a cure.
Like us, the Jones family knows that hope can often be found in the numbers, and they believe their transformative gift will help find a cure for kidney disease, once and for all.
That’s why June and her husband Russ (Shopify’s first CFO before his retirement), with their two grown children and their families, have made a $10-million donation to the Campaign to Create Tomorrow through their family foundation.
The Jones family at Russ and June’s downtown home. Photo by Ashley Fraser.
“We want to help researchers at The Ottawa Hospital have the support they need to find cures right here in our hometown.”
— The Jones family
The $500-million Campaign to Create Tomorrow sets in motion a vision to transform how the world delivers healthcare — by building the most technologically advanced hospital in Canada and taking groundbreaking research and innovation to unprecedented heights.
Philanthropy is a central tenet of the Jones family philosophy. They’ve given generously to a multitude of charities and are longtime supporters of kidney research, both through the Kidney Foundation and here at our hospital. In fact, three laboratories at our Kidney Research Centre at the General Campus and the Hemodialysis unit at the Riverside Campus bear the Jones Family Foundation name.
Thank you, Jones family, for your ongoing transformative generosity and your unwavering belief in a brighter future. From your inspiring advocacy for organ donations to your dedicated support of healthcare, our hospital and our city will benefit from your kindness.
Hear June Jones in her own words explaining what it’s like waiting for a second kidney transplant and why research is so important.
The Campaign to Create Tomorrow is the largest fundraising campaign in our region’s history. It will help fulfil the most ambitious vision ever for the future of The Ottawa Hospital, focused on four critical pillars.
See how we’ll become the most technologically advanced hospital in the country, using the latest tools to provide the right care in the right space with the right provider.
Through our unique collaborative model of clinicians and researchers working side-by-side, we will bring groundbreaking discoveries to patients in Ottawa — and around the world.
Lukas Marshy takes us on his journey of the night he arrived at The Ottawa Hospital in distress and extreme pain. He needed specialized care from our neurosurgery team for a rare condition that resulted in a massive brain hemorrhage. Here is Lukas’ story in his own words.
It was late afternoon on a cold winter January day in 2012 when I was rushed to The Ottawa Hospital. Something was very wrong. That was ten years ago — but it’s a time in my life I will never forget.
I was 16 years old at the time and was playing video games — nothing out of the ordinary for a teenage boy. I remember I reached down to plug in the speaker for my computer and I felt dizzy — the room around me started spinning. I also realized I had a headache, and it was pretty bad.
I went upstairs to let my dad know, and he initially thought I was coming down with something. He gave me some Tylenol for the headache, and I went to lie down in my room. But when I looked up at the ceiling, it was spinning — I couldn’t even look at it. I yelled for my dad.
At that point, I thought I was going to be sick to my stomach, and he said, “Let’s get you down to the bathroom.”
When he was 16 years old, Lukas Marshy was treated for an ateriovenus malformation (AVM) at The Ottawa Hospital.
Red flags raised
Then I realized I couldn’t stand up — that’s when the red flags went up for my dad. He helped me to the bathroom, and I vomited. I remember clutching onto the toilet because it felt like I was being pulled to one side of the room. It felt like in a movie when someone opens the airplane door and everything gets sucked outside. I was holding on to the toilet bowl so tight.
Eventually, out of exhaustion, I passed out and I was lying on the bathroom floor. I could hear my dad’s voice trying to prompt me to go back to my bed, but I couldn’t respond. He finally said, “If you don’t stand up, I’m going to have to call an ambulance.” And I thought to myself, ‘That’s perfect, I’m going to stay down because I need help.’ I just couldn’t say the words.
“I remember clutching on to the toilet because it felt like I was being pulled to one side of the room. It felt like in a movie when someone opens the airplane door and everything gets sucked outside. I was holding on to the toilet bowl so tight.”
– Lukas Marshy
When the paramedics arrived, they asked lots of questions. They were concerned I had overdosed on drugs or had been drinking, but I knew that wasn’t the case. Eventually, I was able to tell them no.
They got me onto the stretcher, and we headed outside. I remember seeing the snow and feeling the cold on my body as they loaded me into the ambulance. They took me straight to CHEO where a CAT scan of my brain indicated a massive hemorrhage. At this point, doctors recommended that I be transferred to The Ottawa Hospital’s Civic Campus for specialized surgery.
Transferred to The Ottawa Hospital after brain hemorrhage diagnosis
While I was in and out of consciousness, and my memory is a bit spotty, I do remember being in extreme pain. I also remember my mom being by my side. When I think back on that night and arriving at the hospital, that was the worst part of the entire journey — the pain in my head was excruciating.
I was diagnosed with Arteriovenous Malformation (AVM). We learned I was born with an abnormal tangled mass of blood vessels in the back of my head. An intricate surgery by a skilled team was required, and as I waited for them to prep for surgery, I was given medication to ease the pain. That’s the first time I started to feel more comfortable — even though brain surgery was looming.
What is a brain AVM?
An arteriovenous malformation —or AVM — is an abnormal tangle of the blood vessels connecting an artery to a vein. An AVM disrupts normal blood flow and deprives the surrounding tissue of oxygen. AVMs can occur anywhere in the body, but when they’re in the brain, they’re more likely to cause long-term effects. About 88% of AVMs go undiagnosed, and once diagnosed, brain AVMs can usually be treated to reduce risks.
Normal blood vessels.
An abnormal tangle of blood vessels.
My dad stayed with me the whole time I was in the hospital — he even slept by my side at night. The team caring for me was kind, but having my dad with me was an added level of comfort.
“It was almost as though a calmness came over me. I wasn’t nervous at all because whatever was happening to my brain at the time was going to get better.”
– Lukas Marshy
Lukas was treated for a massive brain hemorrhage at The Ottawa Hospital.
When my dad told me I was going to have brain surgery, I reflected on an actual conversation I had with friends a couple years before. We asked each other “What is a type of surgery you’d never want to have?” If you can believe it, I said brain surgery because that seemed the most dangerous.
But when I was actually faced with that reality, I just remember thinking, “No problem.” It was almost as though a calmness came over me. I wasn’t nervous at all because whatever was happening to my brain at the time was going to get better. I also had Dr. John Sinclair in my corner — he’s amazing.
Facing surgery for a brain hemorrhage
By 7 a.m. the next morning, I was ready for surgery.
It was an eight-hour procedure. The hemorrhage was in the cerebellum area of my brain, so the lower left back side of my head. Dr. Sinclair and his team removed most of the clot, which turned out to be pushing against my brain stem. That was scary to learn, but thankfully it didn’t cause any permanent damage. In fact, Dr. Sinclair explained they left a small portion of the clot there, which they cauterized, because they needed the swelling on my brain to come down before they could remove the clot completely.
The surgery was successful, but I wasn’t done yet. I was placed in a medically induced coma for the first few days, and I remained in hospital for two or three weeks before I could go home. That first homemade sandwich I ate when I got home is something I won’t forget. I think it was the best egg salad sandwich I’ve ever eaten! My siblings were all home with me — and my dog — it was so good to be back.
Road to recovery
On February 28, 2012, I returned to The Ottawa Hospital for the second surgery to remove the malformation which had caused the bleeding. During this operation, the remaining clot and AVM were removed from my brain and Dr. Sinclair placed a titanium mesh about the size of a credit card to replace where a piece of my skull had been removed during the first surgery. Once again, I was put in a medically induced coma for three days, and when I woke up my recovery began.
“To this day, my family says Dr. Sinclair not only saved my life, but he made me smarter too!”
– Lukas Marshy
Next up was physiotherapy to help get my strength back. I was determined to get back home for good, so just over a week later when my care team asked me to show them how I managed the stairs, I tackled those steps with determination. I guess my progress was convincing because after that I was cleared to be discharged.
Lukas during his recovery.
A whole new perspective on life
I had to use a wheelchair for a short period before progressing to a walker, but as a 16-year-old, I was ready to ditch it as soon as possible. I resumed my schoolwork at home for a few weeks until I was strong enough to get back to the classroom. I was finally reunited with my friends and was able to return to my grade 11 classes.
Something important to note, my marks after the surgery were in the 90s. I was thrilled because, you see, in grade 10, my marks weren’t anywhere near that level. In fact, I usually got 60s and some 50s. So, to this day, my family says Dr. Sinclair not only saved my life, but he made me smarter too!
“The Ottawa Hospital gave me a second chance at life.”
– Lukas Marshy
I’ve been great ever since. I haven’t had any long-term mobility or balance issues — I was incredibly lucky. Lucky that my dad took those first symptoms seriously and called for help. Lucky to have the brilliance of neurosurgeon Dr. Sinclair and the other healthcare providers leading my care. And lucky to be living a normal life today, because if the AVM hadn’t been discovered early after the symptoms started, it may have resulted in serious disability or death because of where it was located.
Lukas on graduation day.
Today, Lukas Marshy is married with two children.
The Ottawa Hospital gave me a second chance at life. Today, I’m married, have two young children, and I have a great job at Queen’s University in Kingston. That experience ten years ago as a 16-year-old changed my whole perspective on life. If this had not happened to me, I wouldn’t be the person I am today. I’ve been cherishing life ever since.
WATCH: Lukas Marshy reflects on his treatment and shares where he is now, thanks to the skill and dedication of his care team.
Download episode #64 of Pulse Podcast to hear Lukas Marshy’s story.
Originally published: September, 2020 Updated: July, 2022
“Leaner and meaner than ever”
When Fran hit the 18-month mark of his recovery, his care team didn’t want him to get his hopes up. Typically, once patients with Guillain Barré Syndrome (GBS) reach that point, they don’t see much more improvement, but five years later, Fran is still making strides. “I was able to stand up on skates this past winter and started skating for the first time since my diagnosis. Then just a month ago, I regained feeling in my feet. It was a feeling that I haven’t experienced since I got GBS,” explains Fran.
He’s even back to long-distance cycling and is feeling stronger each day. “I’m leaner and meaner than ever,” says Fran with that infectious smile.
Read Fran’s original story below and learn why he’s so grateful for the care he received at The Ottawa Hospital.
Long-distance cyclist Fran Cosper described himself as being in the best shape of his life as he headed into the winter of 2017. However, in mid-February he woke up in the middle of the night unable to feel his legs. The next morning, when Fran tried getting out of bed, he slammed onto the floor – his strong legs suddenly useless. Soon after, he was diagnosed with Guillain Barré Syndrome (GBS) – facing the possibility of permanent paralysis. Little did he know the road ahead would involve a team of experts, the help of 3D virtual reality at The Ottawa Hospital, and a determination not only to walk again, but also to help other patients.
When Fran first experienced those sudden symptoms, he initially thought it couldn’t be anything serious as he was very health conscious. He attempted to make his way to the basement that morning to work out. “I went to get on my hands and knees, and fell face-first on the carpet. I thought, ‘Well, I can’t move. This is much more serious.’ My wife, Elise, came down and saw that I had facial paralysis, and thought I’d had a stroke.”
But Fran knew that strokes typically affect only one side of the body and that something else — something serious — was happening.
What is Guillain Barré Syndrome?
Fran in hospital.
After a thorough assessment, Fran was diagnosed with GBS. This rare autoimmune disorder causes the immune system to attack the nerves, damaging the myelin sheath, which is the nerves’ protective covering. As a result, the brain can’t transmit signals to the nerves in the muscles, causing weakness, numbness or, as in Fran’s case, paralysis.
An infection or virus can bring on GBS. The 56-year-old had had two colds back-to-back, which may have thrown his immune system into overdrive. Within days, his balance was off, and he had difficulty lifting pots to cook dinner. Hours later, the disease was full blown, attacking his nervous system and Fran couldn’t move.
“It was like having an out-of-body experience. I mean my brain was working fine but my body wasn’t doing what I asked it to do.” – Fran Cosper
“We see patients with Guillain Barré Syndrome at The Ottawa Hospital Rehabilitation Centre probably five or six times a year,” says Dr. Vidya Sreenivasan, a doctor of physical medicine and rehabilitation. Some have mild cases, but others, like Fran’s, are more serious.
A more challenging road to recovery
About one in 100,000 Canadians contracts GBS every year. Recovery can take more than a year because the nerves re-grow slowly, one millimetre per month. For Fran, the journey would be much longer.
The disease continued its nerve damage following his admission to the hospital. After two weeks, he transferred to the Rehab Centre, where his care team included doctors, psychologists, social workers, recreation therapists, physiotherapists, respirologists, occupational therapists, and nurses.
“I decided at that point, I was going to fight it. I was going to fight back and do the best I could to get better even though I didn’t know what the outcome was going to be.” – Fran Cosper
Fran was completely dependent on this team for all of his care. He needed to be washed, dressed, and turned in bed. He couldn’t even close his eyes. The nurses had to tape his eyelids shut so he could sleep.
“It was like having an out-of-body experience. I mean my brain was working fine but my body wasn’t doing what I asked it to do,” says Fran. He also faced excruciating pain because of the damage done to his nerves. As Fran lay there unable to move in his hospital bed, he made a decision.
“Oddly, I wasn’t afraid. I decided at that point, I was going to fight it. I was going to fight back and do the best I could to get better even though I didn’t know what the outcome was going to be.”
Rehab team ready with state-of-the art technology
Fran’s excellent fitness level, as well as his determination and positive attitude, helped him through when it came to the rigorous therapy plan. He had physiotherapy five hours a day, including three times a week in the Rehab Centre pool. Within two months, he could stand and take steps with help. He learned to walk again thanks in part to our Virtual Reality lab – one of only two in Canada.
Fran would visit the Rehab Centre pool three times a week.
“The pool and this 3D room were invaluable. It would have taken me a lot longer to get my legs back if I didn’t have access to those tools.” – Fran Cosper
The CAREN (Computer-Assisted Rehabilitation Environment) system combines room-sized 3D graphics, a platform that moves with the patient in a harness, as they explore the 3D world, a dual-tread remote-controlled treadmill, and world-class motion analysis technology. Preprogrammed visual presentations allow the patient to respond to an environmental stimulus by shifting weight, increasing or decreasing speed and even making specific motions. Difficulty levels can be increased gradually as the patient progresses further in their rehabilitation treatment plans.
Fran learning to walk again thanks in part to our Virtual Reality lab – one of only two in Canada.
“This room is right out of sci-fi. It really challenges your body. After an hour of doing exercises, I was just sweating. The pool and this 3D room were invaluable. It would have taken me a lot longer to get my legs back if I didn’t have access to those tools.”
“I’d basically been swiped off the planet for a year. But the only negative thing about being in the hospital was the disease itself.” – Fran Cosper
For Dr. Nancy Dudek, Medical Director, Amputee Program at The Ottawa Hospital Rehabilitation Centre, this unique system offers many benefits to patients. “There’s no end to things you can do with that sort of creativity. To be able to be hooked up to a harness without the support of the parallel bars still gives you the safety aspect. It’s a very innovative and beneficial system.”
Installed in 2010 in partnership with the Canadian Forces and with support from the community, the CAREN system was initially used in part to help injured soldiers returning from Afghanistan. Since then, many patients have benefitted, including those who have had a traumatic brain injury, stroke, neuromuscular disease, amputation, or chronic pain.
Continuing the road to recovery
Released from the Rehab Centre in October 2017, tears were shed by Fran and nurses who cared for him. It was those nurses who helped Fran with day-to-day care, teaching him how to wash and dress himself and be independent again.
Fran receiving care from the rehab team.
“I can honestly say that the kindness and level of care I got really humbled me. The nurses and staff have just been marvellous,” says Fran. “I’d basically been swiped off the planet for a year. But the only negative thing about being in the hospital was the disease itself.”
He walked out of the Rehab Centre using a walker. When he returned a month later for a follow-up appointment, he walked in on his own.
Today, Fran is back riding his bike – not quite to the 100-kilometer distances, yet, but his therapy continues. He still deals with pain, and his arms were slower to recover. His fine motor skills in his fingers are taking longer to get back to normal. As a saxophone player, he’s motivated to get his fingers working again.
“I’m kind of at the point now where I’m thinking I may be able to play again someday. I’m hopeful that I’ll be able to play my sax because my fine dexterity is improving – it’s a work in progress.”
Giving back as a volunteer
Fran will never forget two volunteers in particular who were there for him when he was being cared for at the Rehab Centre. Chris and Claude would come and take Fran for coffee and to talk. Initially, he had no idea who these blue-vested people were, but Fran quickly learned the important role they play at the hospital.
“I remember asking Chris why he was a volunteer. Chris explained to me that he had an inoperable brain tumour, and he was going to die. He told me, ‘I figured the hospital took such good care of me that I would spend the rest of my time volunteering.’ I broke into tears and decided right there I had to become a volunteer,” says Fran.
Today, Fran gives back as a volunteer at our hospital.
Pre-COVID, Fran would spend two days a week meeting patients, sometimes visiting his old room at the Rehab Centre, inspiring them about what is possible. “I remember seeing a woman in a hallway; she was on a gurney and going in for surgery – she was by herself. I stopped, leaned over, and told her it was going to be ok. Afterwards, I saw her again and she said, ‘Thank you.’”
That’s why Fran proudly wears the blue vest. He’s experienced the dark days and today, he’s happy to be able to help others when they need a reassuring voice to help them through – just like Chris and Claude helped him. He’s also grateful to be able to volunteer his time at the hospital that cared for him during his long journey to recovery.
Listen to Fran Cosper in his own words during a guest appearance on Pulse: The Ottawa Hospital Foundation Podcast.
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
Categories: Rehab, Technology, TOH Family
Rare is a word used to describe Bryde Fresque on many levels. He has a zest for life that sets him apart. In fact, his physician Dr. Carolyn Nessim, a surgical oncologist and clinician investigator at The Ottawa Hospital saw this firsthand when Bryde faced a diagnosis that would have him battle for his life, with one rare condition after the other. Ultimately, it would take a skilled team to come up with a diagnosis and treatment for Bryde – a pheochromocytoma – an uncommon tumour that left Bryde’s future uncertain.
Bryde’s journey to his diagnosis of a rare cancerous tumour began on Boxing Day of 2012. He was travelling home from Napanee when he started to have pain in his left side. He stopped at a pharmacy just outside Ottawa and by the time he got to the counter he was doubled over in pain. The pharmacist told Bryde to get to the closest hospital — a community hospital was not far away.
Not long after arriving in their emergency room, Bryde was sent by ambulance to The Ottawa Hospital where he could receive care that is more specialized. He was in a tremendous amount of pain. Upon arrival, Bryde was suffering from a spontaneous hemorrhagic rupture of the left adrenal gland and he was bleeding significantly. Thankfully, he was in good hands as our interventional radiologists performed an emergency embolization procedure. This is a procedure where a guide wire was placed in a vessel in his leg and that allowed physicians to get all the way to the bleeding vessel by the adrenal gland, at which point they injected a product that plugged the vessel and stopped the bleeding. He was hospitalized for ten days before he was able to go home.
Unusual symptoms continue to develop
Bryde continued to feel off. A young, active man, Bryde recalls unusual symptoms that he couldn’t shake. “I remember feeling really sweaty, I couldn’t cool down properly. I would stand under the gym’s cold water shower for 15 minutes post bike ride and it didn’t make a difference,” recalls Bryde.
By the summer of 2013, he was going through a battery of tests and questions at our Cancer Centre to try to pinpoint the diagnosis.
“He had such rare conditions – one right after the other.”
— Dr. Carolyn Nessim
Bryde and Natalie kayaking in Iceland.
Though, at only 32 years old, cancer was the furthest thing from Bryde’s mind. “I was young, healthy, a non-smoker, non-drug user, and active. That active part of my life was actually the only time I initially showed symptoms. That’s when I would overheat on even the coolest days and couldn’t cool down afterwards.”
The spontaneous rupture of Bryde’s adrenal gland six months earlier contributed to the challenge of pinpointing a diagnosis. It was believed he suffered from a large hematoma – a large residual clot after the bleed. “He had such rare conditions – one right after the other. A spontaneous rupture of an adrenal gland happens very rarely. I would say the challenge is that because the blood clot is so significant, it hides the underlying tumour and so it’s difficult to identify on imaging,” says Dr. Nessim.
Pinpointing the cause
Bryde Fresque was treated for a rare cancer at The Ottawa Hospital.
As time progressed, Bryde developed issues breathing, he couldn’t bend in certain directions, and then he noticed a distention on his left side. Signs that had been pointing to a hematoma didn’t add up because a hematoma should have healed within a few months, according to Dr. Nessim. That’s when she started looking at the fact this could be a tumour.
Bryde’s case ultimately landed with The Ottawa Hospital Sarcoma Tumour Board. “We meet every Friday to discuss complex cases like Bryde’s. Everyone is in the room including medical oncology, radiation oncology, pathology, radiology, and surgery. We take each individual case and we discuss it as a group to determine the best course of action for a patient,” explains Dr. Nessim.
This panel of experts decided that surgery was the best course of action to not only diagnose Bryde’s condition but to treat him at the same time and remove this tumour that had significantly affected his quality of life. Given the large size of the tumour and the extent of organs it seemed to be invading on imaging, this would be a long and extensive operation with many potential risks and complications that would be best mitigated by a specialized team. The sarcoma team is well equipped and knowledgeable in how to do these complex operations. Our hospital is one of the three Cancer Care Ontario designated Sarcoma Centers in the province. Although Bryde did not have a form of sarcoma, the surgical approach for a pheochromocytoma is the same.
Most unusual pre-op visit
By the fall of 2013, the mass located on Bryde’s left side was now the size of a cinder block. Staying true to his rare and unique personality, Bryde, who loves Halloween, showed up for his pre-op appointment on October 31, 2013, wearing his homemade Iron Man costume!
On November 15, a huge team of more than 20 medical professionals assembled in the operating room. As Bryde lay on the operating table awaiting surgery, he recalls Dr. Nessim telling the team about the Halloween pre-op appointment, “Then she looked down at me and said, ‘Take a deep breath, Iron Man’ as I was intubated.”
Bryde had to put his full trust in Dr. Nessim and her team during the complex, 12-hour surgery. The procedure can carry several risks because although Bryde seemed to have a non-functional pheochromocytoma, with the stress of surgery there is always the risk of stimulating the tumour causing it to release adrenaline, which can lead to a serious increase in blood pressure during surgery. Bryde was given some special medications during the operation to help ensure that didn’t happen.
“I feel privileged every time I’ve been able to help a patient.”
— Dr. Carolyn Nessim
Dr. Carolyn Nessim, Bryde’s surgical oncologist
Just prior to going into the operating room for this intricate surgery, Dr. Nessim reviewed the scans one last time and then visualized each step, planning the order they would follow to remove the tumour successfully. The highly skilled group alongside Dr. Nessim included a urologist, a thoracic surgeon, and a Hepato-Biliary and pancreatic surgeon, along with two anesthesiologists. “It was a big case,” says Dr. Nessim.
Bryde had his left kidney removed, as well as his left adrenal gland, and a third of his pancreas. They performed a colon, bowel, and diaphragm resection and reconstruction for each, removed his spleen as well as an accessory spleen, which can be found in many patients, 10 lymph nodes, and the hematoma. Thankfully, Dr. Nessim was also able to remove the entire tumour. The surgery was a success.
Finding the answers
Bryde spent a total of 40 days in hospital recovering, and it was during that time that he finally received an explanation for his symptoms. He was diagnosed with pheochromocytoma, which is a rare form of tumour that can be cancerous. They usually form on one of the body’s two adrenal glands, which are located above the kidneys, and approximately 10% of pheochromocytomas spread to other parts of the body. Pheochromocytomas can be dangerous because they may produce an excessive amount of the hormone adrenaline, which makes people sick, primarily by increasing their blood pressure. In Bryde’s case, what made a diagnosis challenging before surgery was that his pheochromocytoma was considered non-functional, and his urinary tests for adrenaline markers were negative. But it’s possible it was releasing low levels of adrenalin all along.
“The Ottawa Hospital is very well positioned in the study and treatment of this rare but dangerous tumour.”
— Dr. Neal Rowe
“It potentially explains all his sweating and feeling very flushed and hot as maybe he had a subclinical release of adrenaline,” confirms Dr. Nessim. Bryde also learned the tumour was cancerous.
Expertise in pheochromocytomas
Bryde Fresque, his wife Natalie, and their son Edmond.
Much of the research, around the globe and here at our hospital, focuses on timely detection and treatment of pheochromocytoma. Dr. Neal Rowe is a clinical urologist at The Ottawa Hospital researching this type of tumour. “There are several known genes that increase the risk of a patient developing a pheochromocytoma. By identifying these genes in people, we can test family members, achieve early detection, and better understand the biology behind why these tumors form.” Dr. Rowe says this type of tumour affects between one to two cases per 100,000.
“Thanks to Dr. Nessim and the team at The Ottawa Hospital, I got better – I get to enjoy my life to the fullest. I got to marry the girl of my dreams and I got to become a father.”
— Bryde Fresque
“The Ottawa Hospital is very well positioned in the study and treatment of this rare but dangerous tumour. We have a collaborative group of experts in endocrinology and medical genetics in addition to a dedicated team of anesthesiologists and surgeons. With our research and development of various national initiatives, I think we’re front and centre,” says Dr. Rowe.
Moving forward, upwards, and giving back
Today, Bryde is seven years post surgery, and cancer free, with no signs of recurrence. While his recovery took time, he’s back to living his active life and truly grateful for the care he received. In fact, to raise funds and awareness for rare neuro endocrine cancers, Bryde and his wife, Natalie, climbed Mount Kilimanjaro in Tanzania, as well as the highest pass in the world, located in Annapurna range of the Himalayas in Nepal – all while still being considered a cancer patient.
Bryde and Natalie on Mount Kilimanjaro.
“Being a cancer patient or being sick is a life-changing event. Thanks to Dr. Nessim and the team at The Ottawa Hospital, I got better – I get to enjoy my life to the fullest. I got to marry the girl of my dreams and I got to become a father.” He adds, “I honestly think if I had been anywhere else, if I had been under anyone else’s care, I probably wouldn’t be here today. I really wouldn’t.”
That’s why Bryde also holds an annual Halloween fundraising party, known as Spadinaween, to support our hospital. To date, he’s raised over $10,000 and Dr. Nessim even drops by to show her support.
The special bond between this patient and physician continues, as Bryde even enrolled to help Dr. Nessim with a global research project on sarcomas. For Bryde, it’s an honour to help other patients. “Me giving back to The Ottawa Hospital has come full circle as I was invited to partake in an international study on sarcomas with Dr. Nessim and other doctors from the UK, Italy, the States, Netherlands, and Australia – to help improve the patient experience. If I can turn a negative into a positive. I’m in!”
Seeing Bryde thrive today is what makes those long, grueling days in the operating room and the constant search for answers worthwhile. “It’s why I do my job. It’s the biggest joy and most rewarding,” says Dr. Nessim. “I feel privileged every time I’ve been able to help a patient.”
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
Categories: Cancer, World-Leading Research, World-Leading Research
100 Holes of Hope
Save the date! Monday July 29, 2024
The 100 Holes of Hope is an annual charity golf marathon. Our participants (2-person and 4-person teams) – or as we like to call them, Golf Warriors – play 100 holes of golf in one day… or at least give it their best shot. Our 2-person teams are required to raise a minimum $1,500 each in pledges or combined team amount of $3,000 and our 4-person teams to raise $1,000 each or team amount of $4,000.
To say The Ottawa Hospital is ahead of the game when it comes to data in healthcare is no exaggeration. In fact, for two decades we’ve been exploring the role of “big data”, while other institutions are only getting started. Today, our hospital is a world-leader in this field and has ambitious plans to deploy one of the most advanced data analytics platforms in Canada, if not the world.
It’s that drive to better serve our patients and our people that attracted Dr. Alan Forster to The Ottawa Hospital 20 years ago. “I left Harvard Medical School to become a part of a healthcare community that was completely committed to reorienting around patient safety and quality of care.”
Today, the Vice-President of Innovation and Quality and senior scientist at our hospital is quick to point out that while our hospital’s research community may have seemed smaller than Harvard’s or other centres around the world, he didn’t it see that way — and he still doesn’t. “We do punch above our weight in terms of impact,” explains Dr. Forster.
What is Big Data?
The term Big Data gained momentum in the early 2000s and refers to data that is large, complex, and rapidly generated. It is collected and mined by organizations for information, learning, and other analytics purposes including predictive modelling. The amount of data created by the healthcare industry through digitized records, medical technologies, and other sources means Big Data could change healthcare — if used effectively.
Why the desire for data to drive healthcare?
As a specialist in internal medicine, Dr. Forster was keenly aware of the patient journey, the role of the care team, and how that information flows. Or in some cases doesn’t. He was also aware of how little information was available to care teams regarding the patients they see. At the same time, there was no system in place to share information with the patient or the patient’s other care providers.
Dr. Alan Forster is the Executive Vice President and Chief Innovation and Quality Officer at The Ottawa Hospital.
Even more astonishing to Dr. Forster, there was also no ability to collect and store this information, or to monitor results, compare data, and learn from it. “After we provided patients with some of the most advanced technologies known to humankind, we could not even communicate our treatments or evaluate the impacts of what we did.”
He would use what he learned at Harvard — known at the time as one of the few hospitals in the world with a fully functional electronic medical record system — to drive change when he returned to his hometown of Ottawa. He knew a data warehouse would allow The Ottawa Hospital to study and monitor patient care efficiently and effectively.
Where does healthcare data come from?
Healthcare data is generated from a huge range of sources, from medical records and staff schedules to wellness apps and wearable technology.
And so in 2004, with the full backing of the hospital’s leadership and funding from the Canada Foundation for Innovation, Dr. Forster began to build the infrastructure needed to house all this data. Five years later, The Ottawa Hospital’s Enterprise data warehouse was born.
For the first time, everything from basic patient information, surveys, and clinical notes to data from labs, pharmacies, and radiology, as well as financial and human resources data were housed in one place. These electronic medical records, from as far back as 1996, pulled information together from across the hospital in a standardized format. Housing it in a “warehouse” also allowed for studying and monitoring of patient care in a way that simply wasn’t possible before. In fact, healthcare providers could track a patient through all their interactions with the hospital, whether they visit a lab, the Emergency Department, or a clinic appointment.
But that was only the beginning.
Comparing apples to apples
Next up was aligning the whole hospital to use data to drive us forward. Deanna Rothwell, the Director of Analytics, leads the charge for the self-serve and data request services. “We build dashboards to find key performance indicators for leaders, so they have a single view of the truth and the facts of the hospital.”
“The demand for data is growing exponentially because of the awareness about how data can drive better decisions.
– Deanna Rothwell
This gives true data comparisons to analyze the data equally — an apples-to-apples comparison. Ms. Rothwell explains how when she first began her role in 2008, each person would come to meetings with different versions of a metric, like hospital admissions as an example. “People would have different definitions and retrieve data from different places. There was no standardization and there was also no standardized way of slicing and dicing the organization. So, we put a lot of effort into how we define things and a platform where everyone could get the same results,” she explains.
The process began to align the physician and administrative teams with the same scorecard and messaging. Ms. Rothwell’s team played a key role in ensuring easy access to information when it was needed. Dashboards were created to not only allow various teams or departments and research groups to see current results and trends over time, but also to drill down to different areas of the organization that are relevant to specific service lines or departments.
However, as the desire for data continues to grow a new challenge has emerged —accessing numbers quickly. “The demand for data is growing exponentially because of the awareness about how data can drive better decisions. Today, there’s more data out there, especially with EPIC, and that demand continues to increase. We wanted to provide a platform where people could safely and securely explore data on their terms,” explains Ms. Rothwell.
This is where MDClone comes in and it’s a game changer for our hospital. “MDClone offers a platform where people can self-serve and ask any data question they want at any time. So, they no longer must go through a queue of the analytics team,” explains Ms. Rothwell. “It’s data at their fingertips.”
“It uses synthetic data which means it is made up data about made up people rather than the patient’s personal details. That’s why it’s so exciting — you don’t have to worry about privacy.”
– Dr. Alan Forster
Our introduction to MDClone came through our partnership with the Sheba Medical Centre ARC (Accelerate, Redesign, and Collaborate) Network based in Israel. Developed in 2018, our partnership has grown and the Network itself has also grown globally.
Ziv Ofek, CEO of MDClone, leads a workshop on the use of MDClone technology for data analytics.
The MDClone platform is a powerful, self-service data analytics environment enabling healthcare collaboration, research, and innovation. Our hospital recently implemented the software to gain easier access to data for all physicians, researchers, and staff. As early adopters of the technology, we’ve been able to fulfil a niche of self-serve data.
MDClone removes the largest roadblock faced by anyone wanting to access data at our hospital — privacy. As Dr. Forster explains, the company provides an innovative approach to solving those problems. “It uses synthetic data which means it is made up data about made up people rather than the patient’s personal details. That’s why it’s so exciting — you don’t have to worry about privacy.”
What are the benefits of synthetic data?
The synthetic data behaves and has the same characteristics as the real data, without being the real data. Once you’ve decided if you’re on the right track with the synthetic data then you can apply to access real data with appropriate approvals to drive your results. An example could be a hospital employee who’s trying to determine how to reduce anemia for patients who go through surgery. They could use lab data to determine:
The number of patients who are going into the operating room.
What their rates of anemia are?
What their long-term outcomes are, or even short-term?
How long are they in the hospital?
Do they have complications when they’re in the hospital?
The data can show trends that can influence or inform future care and determine the cause of problems needing to be solved. Ms. Rothwell explains, “If I can reduce anemia by x percent, I know that I would reduce the hospital’s re-admission rate by 10 percent, just as an example. I can also estimate the impact of that on the hospital overall. I can then use data to monitor my progress on that issue and evaluate the outcomes. You need data at all points of the quality improvement process.”
What is Synthetic Data?
Synthetic data is artificially created data that stands in for real data while reflecting the actual statistical information from the original data. Synthetic data prevents users from identifying any individuals from the data, making it the most private solution to healthcare data analytics.
Leading the pack with healthcare data analytics
“As a healthcare organization we are ahead of the game, and we’ve been ahead of the game for many years. The ability to get your hands on synthetic data is phenomenal. It’s a great story for The Ottawa Hospital.”
– Deanna Rothwell
This all began as a pilot project in 2020 when the hospital’s data warehouse information was uploaded into MDClone and a trial run began. Then a training program was established with 250 individuals trained to date and more waiting due to high demand.
Data is also driving research at our hospital. When a study is being conducted, a scientist must wait for approval from the Research Ethics Board (REB) to get access to data. But with the MDClone’s synthetic data, they can do some early legwork. “You can do all of your exploratory work and analysis, understand the feasibility of the study, understand what the data is going to look like, and in parallel submit your REB application. People can go onto the platform, explore it themselves, and figure out exactly what data is going to be meaningful to them. So, when their REB approval comes in, they may have already completed the study design and analysis with synthetic data, so that speeds it up enormously,” says Ms. Rothwell.
Ultimately, it’s about accessing data faster to make better decisions, inform care, and find answers to provide better results for our patients. “As a healthcare organization we are ahead of the game, and we’ve been ahead of the game for many years. The ability to get your hands on synthetic data is phenomenal. It’s a great story for The Ottawa Hospital,” says Ms. Rothwell.
It all comes from data because data helps us know what’s working, helps us identify where the gaps are, and helps us develop solutions to improve — all of that rests on the data.”
— Dr. Alan Forster
Listen Now: How data drives better care for patients
Data and technology make for a bright future in healthcare
New Campus Development
At the New Campus Development on Carling Avenue, data that will inform better patient outcomes and a better patient experience. The new Centre for Innovation and Virtual Care is an excellent example of that — equipping patients with take-home technology, empowering them to manage their health using the latest artificial intelligence. Care teams will be able to remotely monitor a patient’s health journey and provide care when it’s needed.
“We will have better ways to support care providers to help patients rehabilitate. It all comes from data because data helps us know what’s working, helps us identify where the gaps are, and helps us develop solutions to improve — all of that rests on the data,” explains Dr. Forster.
City Connections
Being in Ottawa, at the heart of Canada’s high-tech sector has allowed us to stay ahead of the curve when it comes to technology and innovation — whether it’s training programs through our colleges and universities, the launch of the TD AIM Hub, or our relationship with Invest Ottawa — the economic agency for the City of Ottawa. Our connections to the business community have led to very tangible benefits.
In the future, we will provide living laboratory space to ideate, develop, test, and scale digital innovations and incubator space for revenue-generating partnerships with leading companies and thinkers addressing healthcare’s biggest challenges — all while training the next generation of healthcare innovators.
Categories: Innovation and Technology, Patient Care, Technology
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