Donor lungs with hepatitis C safely transplanted to patients at UHN

Donor lungs from individuals infected with hepatitis C have been successfully transplanted into 10 patients at Toronto General Hospital (TG), University Health Network (UHN).

All patients have recovered from their transplant surgery. Eight of them have already tested negative for the virus and the last two patients have recently started taking the drug regimen.

The transplants are part of a clinical trial that is the first to assess the safety of transplanting hepatitis positive organs to non-infected patients using the ex vivo technology. Developed at TG in 2008, the Toronto Ex Vivo Lung Perfusion System (EVLP) perfuses organs outside of the body, allowing doctors to assess the organ and predict how well it will do before transplantation.

The use of hepatitis C infected organs to help deal with the shortage in organ donors will be discussed by experts at the Global Hepatitis Summit, which starts in Toronto on June 14.

“With the opioids crisis and persistent high rates of intravenous drug use, we have a great number of potential lung donors who are hepatitis C positive – many of whom didn’t even know they were sick when they were alive,” says Dr. Marcelo Cypel, thoracic surgeon at TG, UHN, scientist at Toronto General Hospital Research Institute (TGRI) and principal investigator in the study.

“The current protocol is to not use these organs, but we started to question if that still made sense in an era when direct anti-viral agents (DAAs) can cure hepatitis C,” he says.

The study is led by Drs. Cypel, Atul Humar, Medical Director of UHN Transplant, and Jordan Feld, specialist from the Toronto Centre for Liver Disease, TG, UHN.

Dr. Marcelo Cypel estimates there could be 1,000 more lungs available for transplant every year in North America by using hepatitis C positive organs (Photo: UHN)

In recent years, the latest drug regimen of sofosbuvir-velpatasvir for a 12-week period has been used to cure patients with hepatitis C around the world. However, there were still concerns around how this could impact transplants.

The questions researchers want to answer are: if hepatitis C negative patients can be safely transplanted with infected donor organs, and whether they can clear the virus after their surgery.

For this study, lungs were placed in the EVLP circuit in a sterile dome for six hours. The surgical team was able to evaluate the lung function and be certain that the organs were suitable for transplant, despite being infected with hepatitis C.

After six hours, EVLP reduced the hepatitis C virus count to very low levels. As expected, patients still contracted the disease. However, they tested negative for hepatitis within only three weeks of treatment with DAAs, in average.

Developed at UHN, the Toronto Ex Vivo Lung Perfusion System (EVLP) perfuses organs outside of the body. (Photo: UHN)

“This is an initial study, but it shows positive results,” says Dr. Feld. “It suggests that it is safe to use these organs which otherwise we could not have used. This could eventually be a big boost for organ donation.”

“We have a long standing tradition of excellence and pushing boundaries in transplant research and we are pleased that we were able to pioneer this study,” Dr. Humar says.

Dr. Cypel estimates that accepting hepatitis C positive donors would increase the number of lungs available for transplant by 1,000 per year in North America. Currently, approximately 2,600 lung transplants are done per year in Canada and the United States combined.

As of 2016, there were more than 240 patients waiting for a lung transplant in Canada alone and the estimate is that 20 per cent of patients die while waiting for lungs to become available.

Patient experience

As important as the fight against the virus, is the fight against stigma. As studies start to show that it is safe to transplant organs from hepatitis C positive donors, doctors are educating patients about the disease and on how effective DAAs are in curing it.

Stanley De Freitas, 73, is one of the patients who received lungs as part of the study. He suffered from pulmonary fibrosis and agreed to receive hepatitis positive lungs in October, 2017.

“People take breathing for granted and don’t realize the limitations of having a pulmonary disease,” says De Freitas.

“Now, every breath I take I think of my donor and it doesn’t matter that the donor had hepatitis C. I didn’t even have any symptoms of the disease. I recovered well and now I can enjoy life with my two daughters, four grandchildren and my two great-grandchildren.”

De Freitas says at first he was worried about contracting hepatitis C, but after receiving information about the disease, he didn’t think twice and gladly accepted the life-saving lung transplant. He urges other patients to do the same.

“If these lungs or other organs are available, go for it! The treatment is effective and you will have your life back.”

Eva Runciman, 52, suffered from Chronic Obstructive Pulmonary Disease (COPD). Before her transplant, in February, she couldn’t walk because she had difficulty breathing.

“I would tell everyone waiting for a transplant not to be afraid of accepting organs with hepatitis C, trust the treatment,” she says. “The change in life quality is just amazing. I now can walk, I can drive and play with my grandkids.”

(Photo: UHN)

About the clinical trial

The first phase of the study was comprised of the 10 surgeries – performed between October, 2017 and May, 2018. The average age of the organ donors was 33 and the average age of the recipients was 64. The study will be followed by a second phase that will further assess techniques to use organs carrying the virus.

This work is supported by the Canadian Institutes of Health Research, Medicine by Design, Toronto General & Western Hospital Foundation, Gilead Sciences and Xvivo Perfusion. Dr. Cypel also praised the efforts and support of Trillium Gift of Life, which co-ordinates organ and tissue donation across Ontario and without whom this trial would not have been possible.

“We are very grateful to our donors and to Trillium for coordinating the organ donor lists and making it possible for us to conduct this study.”

The Global Hepatitis Summit, 2018 is being held at Metro Toronto Convention Centre from June 14 to 17.

“The advent of DAAs has really created a dramatic shift in how we treat hepatitis C. This study is a perfect example of the latest developments in this exciting rapidly moving field that we will be discussing during this week’s Global Hepatitis Summit,” says Dr. Feld.

The summit will bring together top clinicians and researchers from around the world to Toronto to discuss the remarkable therapeutic developments in recent years and the prospect of disease elimination. The Global Hepatitis Summit 2018 is chaired by UHN’s physicians and researchers Drs. Harry Janssen, Jordan Feld and Adam Gehring.

 

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University Health Network is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

 

 

Patients + Research: Andra Fawcett

Meet Andra

Andra survived a major stroke in her early 50s. She continues her progress to full mobility, but she’s also keen to help others by taking part in research. She was excited to participate in a study using the KINARM, a game-changing robotic technology used in all three Kingston academic research hospitals to assess the neurological impact of a wide range of injuries and diseases. The reams of data produced by the KINARM are used to help researchers and clinicians better understand the effects of brain injuries such as stroke.

Can you tell us a bit about your family and your family’s health story?

I had my first stroke when I was 49. It was a mini-stroke (or TIA) and I lost the use of my left arm and hand for about a month. Two years and two months later, I had a major stroke.  I was at home and I was feeling tired, nauseous, weak, and dizzy. I was stumbling and my left foot felt heavy, but light at the same time.  I realized this was not normal. My daughter-drove me to hospital. While I was waiting in the ER, I didn’t have any of the classic stroke symptoms – my face wasn’t drooping, I didn’t have trouble speaking, I never really felt anything. But when I woke up the next day, I had lost all my mobility on my left side.

I was in Kingston Health Sciences Centre’s Kingston General Hospital for two weeks and then six weeks in rehab at Providence Care. After my TIA, my stroke doctor connected me with the KINARM. It’s a robotic system that assesses how brain injuries affect our ability to move and function. After my second stroke I started doing more testing with the KINARM group. I’d go every six months or so, and I’ve done it for the last couple of years.

The KINARM collects detailed data about how the stroke has affected me, and how I’m gradually recovering. This information is valuable to researchers because I’m younger than the average stroke patient. Everyone’s stroke is different, and everyone recovers differently, so I’m hoping the information that they’re getting from me will help them better understand stroke.

Andra Fawcett Kingston Health Sciences Centre CAHO
Andra sitting in KINARM, a robotic system that assesses how brain injuries affect motor function

What does health research mean to you?

Research is how doctors are going to find new ways to prevent or treat strokes. When I was in hospital, I was a lot younger than the other stroke patients, but they were up and walking while I was staggering around like a toddler. I’m hoping that the KINARM can gather enough data from me to tell them why it takes a 50-year-old longer to recover than an 80-year-old. That’s what research is about – it can determine the hows and whys.

How can the patient voice support, improve or empower health research?

The more patients share their experiences, the more we can all learn. It’s about getting involved, because stroke patients get a lot more from people who have gone through it. I give talks at our hospitals and I use social media to share stories.

Why does health research matter to you and your family?

I’m thankful for the health care I received, because without it I wouldn’t be here today. It takes patients like me, and others, participating in research, providing feedback, it’s how we learn. It’s important to me to do what I can and give back, because that could help someone down the road. If my test results are helping in this research, I’m proud to be a part of it.

How does health research contribute to a healthier, wealthier, smarter Ontario?

Research is important and we can all do our part by taking a little bit of effort to help researchers find out the “whys”, like why do strokes happen to young people, and why does it take some of us longer to recover than others? How can we change this? You do that by getting involved.

 

Top photo by M. Manor, Kingston Health Sciences Centre; KINARM photo by Ethan Heming, BKIN Technologies

 

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Ontario research hospitals, including Kingston Health Sciences Centre, make our province healthier, wealthier and smarter. Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. Learn more about how hospital-based research makes Ontario healthier, wealthier and smarter.

 

 

Patients + Research: Dr. David Gray

Economics professor Dr. David Gray took part in a clinical trial at The Ottawa Hospital to see whether an immunotherapy drug could keep his high-risk skin cancer from coming back. Four years later, he’s still cancer-free.

Dr. David Gray’s cancer was hiding in plain sight.

“It was a blemish on my cheek that just wouldn’t heal,” said the University of Ottawa economics professor and father of two. “My dermatologist didn’t like it, so he had it tested.”

When his dermatologist removed the pea-sized tumour from Dr. Gray’s face, further tests revealed that it was Stage 3c melanoma. He was at high risk of the cancer spreading to other parts of his body.

“During the initial visit, the surgeon told me that the five-year survival was below 40 per cent,” he said.

Faced with those odds, Dr. Gray decided to join a clinical trial that compared an immunotherapy drug called ipilimumab to interferon, the currently publicly-funded treatment used to keep melanoma from returning.

Ipilimumab helps the immune system attack cancer cells anywhere in the body. However, it can have serious side effects. After Dr. Gray’s fourth treatment, his hormonal (endocrine) system went into crisis, and he was hospitalized for four days. He continues to take hormone replacement medication today.

These kinds of side effects have motivated researchers to look for more effective and safer options, said his oncologist at The Ottawa Hospital, Dr. Xinni Song.

“Physicians treating melanoma are looking for something better to keep the cancer from coming back,” said Dr. Song, who is also an assistant professor at the University of Ottawa. “Our patients are very keen to take part in clinical trials, which can not only help them, but future patients as well.”

Four years after taking part in the trial, Dr. Gray is still cancer-free. The results of the trial are still to be published.

“You can’t attribute my survival 100 per cent to the treatment. But my wife certainly does,” said Dr. Gray.

“For me, it was very meaningful that he can enjoy his life with his family and go back to work and continue to teach,” said Dr. Song. “He’s remained cancer-free, and the hope is that he is cured from the disease.”

To spot melanoma early, Dr. Song recommended that you tell your doctor if you notice any changes in your skin, such as new spots or marks that grow or change in colour.

The Ottawa Hospital is a major centre for cancer immunotherapy clinical trials. Researchers at the hospital are also developing new kinds of immunotherapy, such as cancer-fighting viruses and genetically-engineered immune cells. Dr. Gray’s story was originally published on The Ottawa Hospital website.

 

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Ontario research hospitals, including The Ottawa Hospital, make our province healthier, wealthier and smarter. Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. Learn more about how hospital-based research makes Ontario healthier, wealthier and smarter.

North American first: Sunnybrook studies scalpel-free brain surgery to treat depression

For the first time in North America, researchers at Sunnybrook Health Sciences Centre are investigating the safety and effectiveness of using MRI-guided focused ultrasound to help patients with treatment-resistant major depression.

Focused ultrasound is an incision-free, image-guided technology that targets specific areas of the brain using high frequency ultrasound waves.

In this trial, focused ultrasound will be used to cause a lesion in a region of the brain (the anterior limb of the internal capsule) to disrupt a pathway of the brain that has been established as being active in depression. This pathway is considered to be a “highway” connecting the frontal lobes to the emotional centres of the brain, including the amygdala and hippocampus.

“Although we are in the early stages of investigating the safety and efficacy of focused ultrasound in patients with depression, it has the potential to be another treatment option,” says Dr. Nir Lipsman, principal investigator of the trial, and Director of the Harquail Centre for Neuromodulation at Sunnybrook.

Each year, 1 in 5 Canadians will experience a mental health problem or illness, and at some point in their lives, about 24 per cent of adults will experience an episode of major depression.

“I’ve struggled with depression for 30 years and tried just about every treatment in existence,” says Linda Bohnen, the first patient in North America to be treated with focused ultrasound for depression. “What I’m hoping will happen is a slow but steady improvement in my mood and functioning.”

“For patients with major depression who aren’t responding to existing standard treatment therapies, circuit disruption techniques, such as focused ultrasound, make it possible to treat areas deep in the brain noninvasively, without surgical incisions,” says Dr. Anthony Levitt, co-investigator and Chief of the Hurvitz Brain Sciences Program at Sunnybrook.

Focused ultrasound was successfully tested in a world first trial at Sunnybrook and other medical centres for use with patients with essential tremor, which led to Health Canada and FDA approval in 2016. Philanthropic investment has been a major catalyst behind Sunnybrook’s advances in focused ultrasound technology and research. Leading donors to this work are the Weston Brain Institute, The Beamish Family Foundation, FDC Foundation, Slaight Family Foundation, Harquail family through the Midas Touch Foundation and the Connor and Robinson families.

Dr. Kullervo Hynynen, Director of Physical Sciences at Sunnybrook Research Institute, worked with industry partner INSIGHTEC for almost two decades to develop the technology.

“This is innovation, medicine and science coming together to go beyond existing treatments for patients with depression,” says Maurice R. Ferré MD, INSIGHTEC’S CEO and Chairman of the Board of Directors.

“Focused ultrasound is a noninvasive alternative to surgery or radiation that offers the potential to treat more patients with major depression, as well as other psychiatric disorders,” says Dr. Neal Kassell, Chairman of the Focused Ultrasound Foundation. “Sunnybrook has become a leader in focused ultrasound research for brain disorders, and the Foundation is pleased to support this innovative trial.”

Phase I of the trial will involve six patients, ages 25-80 years old, over a one-year period who will undergo one round of focused ultrasound, and then assessed for severity of depression and level of functioning at one month, three months, six months and 12 months.

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Sunnybrook is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

Health and Community Leaders Talk: Allison Sekuler

By Allison Sekuler, vice-president, research, at Baycrest Health Sciences and Sandra A. Rotman Chair in Cognitive Neuroscience (@asek47)

What does health research mean to you?

Health research, specifically aging and brain health research in my role at Baycrest, means discovering the ways in which our brains function, how our brains change with age, and then linking the fundamental mechanisms of neural processing to new innovations that enhance care and add life to years for older adults.

Health research is not an individual endeavour, it’s a team sport. To fully understand aging and brain health, we need to bring together people from a diverse range of backgrounds and disciplines, each of whom contributes a different perspective and skill set to the problem at hand. One of the most pressing problems to solve in aging and brain health and one that is a focus for me in my new role, is the looming public health crisis in dementia.

Fifty million people around the world live with dementia and that number is expected to grow to 82 million within the next 12 years. In Canada alone, it’s been estimated that over 200 new cases of dementia are diagnosed every day on average, although many people remain undiagnosed, without access to treatment or care. The annual cost of dementia care in Canada has exceeded $10 billion, but the cost to those living with dementia, and to their caregivers and loved ones, is so much greater.  Research addressing the problem of dementia needs to tackle a number of fronts: detection, prevention, and treatment.

The research at Baycrest, in our world-renowned Rotman Research Institute for cognitive neuroscience, covers a broad spectrum, from solving the mysteries of the aging brain to improving evidence-based care practices at the bedside and creating cutting-edge technologies to enhance the aging experience.

Our fundamental research is complemented by the Baycrest-led Centre for Aging + Brain Health Innovation (CABHI). CABHI is a first-of-its-kind partnership of healthcare, science, industry and government that provides support to develop, test, and disseminate novel solutions addressing unmet needs in brain health and seniors’ care, and to create a culture of innovation within the long-term care sector.

With CABHI’s support, we are transforming our gold-standard workshops, the Memory and Aging Program and Goal Management Training, into interactive, evidence-based, brain-training products that will be available to anyone in the world with an Internet connection. Through these programs, older adults and individuals affected by brain injuries learn how to boost their memory and mental performance, helping them complete everyday tasks. Our researchers also are testing new ideas for early diagnosis and intervention of dementia, and developing approaches to better support caregivers.

As Baycrest celebrates its centennial in 2018, we’re reflecting on how combining care with fundamental research has led to many critical brain health and aging discoveries and looking forward to contributing many more innovations to help people live long and live well.

How does health research contribute to a healthier, wealthier, smarter Ontario?

The aging brain holds many secrets. By working together, we can understand, protect, and enhance brain health throughout our lifetimes. But we can’t do it all alone.

As one of the most research-intensive hospitals in Canada, Baycrest partners with various institutions in Canada and across the globe. With support from the Government of Canada and Brain Canada, we launched Canada’s first cross-institutional memory clinic, which will allow researchers to speed up the pace of dementia research. Baycrest’s Sam and Ida Ross Memory Clinic is the initial pilot site for the Toronto Dementia Research Alliance (TDRA) database, merging big data and neuroscience, enabling information to be shared across institutions, and bringing researchers closer to discovering effective treatments for Alzheimer’s disease and other dementias.

Our scientists also lead an international team of researchers from 12 sites across three continents developing The Virtual Brain, which combines neuroimaging with the power of artificial intelligence to enhance diagnosis and provide personalized treatments based on brain simulations. Through The Virtual Brain, Baycrest’s and Ontario’s research influence has spread, with more than 10,000 installations of the software around the world. Through our work, Baycrest researchers are dedicated to helping all adults live out their years in comfort and wellness, with a healthy body and mind.

 

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Read more Health and Community Leaders Talk blog posts on our Healthier, Wealthier, Smarter site and share your insights on Twitter with the hashtag, #onHWS. To learn more about how health research makes Ontario healthier, wealthier, and smarter, check out our website and our other blog posts and videos.

ARTIC + Quality Standards: Spreading Quality Care

By Dr. Joshua Tepper and Michelle Noble

Earlier this year, Globe and Mail health writer André Picard wrote a column about innovation in health care. “One of the most frustrating traits of the Canadian health-care system is its failure to recognize and embrace success,” he began. “Imagine if we took all our successful local innovations and pilot programs and actually implemented them on a larger scale,” he wrote later.

In Ontario, spreading innovation in health care is not something to be imagined. It is actually taking place.

ARTIC (Adopting Research to Improve Care) is a partnership between Health Quality Ontario and the Council of Academic Hospitals of Ontario (CAHO), and is one of the only Canadian programs focused exclusively on accelerating the spread of proven health care.

In the past year alone, ARTIC has improved the health of Ontarians by:

  • Expanding the use of primary care Memory Clinics by supporting the implementation of 17 clinics in rural, remote and underserviced communities across Ontario to improve care for patients with memory problems associated with dementia. They provide training for family medicine teams and professionals, meaning patients can receive appropriate care closer to home.
  • Reducing emergency room visits and improving care and the patient experience for up to 2,000 patients annually with opioid or alcohol addiction by supporting META:PHI (Mentoring, Education, and Clinical Tools for Addiction: Primary Care-Hospital Integration). The program has developed rapid access addiction medicine clinics in seven communities where opioid supports are much needed. They integrate care received in emergency departments and hospitals, primary care and front-line community services, enabling patients to seamlessly transition to a rapid access clinic and then, once stable, to a primary care provider. ARTIC and the Ministry of Health and Long Term Care are now supporting the further expansion of the clinics in communities across Ontario.
  • Expanding the use of a proven new tool that provides patients with clear and easy-to-understand instructions to help them manage their care after being discharged from hospital. A report by Ontario’s Avoidable Hospitalization Expert Panel in 2011 found communication of discharge instructions by hospitals to patients was often poor, in part because patients did not understand medical terms or were too stressed at the time of discharge to absorb critical information. Co-developed by patients and health care providers, PODS (Patient Oriented Discharge Summary) is being adopted in 27 hospitals and will benefit approximately 50,000 patients in the first year of its expanded use. If you are interested in adopting PODS at your hospital, contact ARTIC.

ARTIC will continue this important work in 2018. ARTIC has just issued a new call for proposals for high-impact clinical interventions or practice changes that are proven to work and are ready to spread across the province.

What is unique about this year’s call is that proposals are being sought for proven interventions or practice changes that align with Health Quality Ontario quality standards. Quality standards outline for clinicians and patients what quality care looks like and focus on conditions or topics where there are large variations in how care is delivered, or where there are gaps between the care provided in Ontario and the care patients should receive.

Based on the best available evidence, the standards are intended to enable critical conversations between patient and health care professional by providing them with tailored guidance to make them more comfortable and knowledgeable about the relevant condition.

To date, quality standards are been developed for a wide range of conditions including dementia, heavy menstrual bleeding, hip fracture, major depression, palliative care, opioid prescribing for both acute and chronic pain, and for the treatment of opioid use disorder.

To be eligible for ARTIC funding, proposed clinical interventions or practice changes must have already been proven and successfully implemented in at least one site, and must have involved patients and families in the development of the initiative and plans for its future spread. How patients are involved is a key criteria in assessing project proposals.  If you have or know of an intervention that’s ready to be spread across Ontario, we encourage you to apply.

As André Picard noted in his article, too often successful health innovations are piloted at one organization but never spread further. ARTIC is solving that problem by successfully seeding innovative projects in communities across Ontario, thereby providing quality care to patients and families.

 

Dr. Joshua Tepper is President and CEO of Health Quality Ontario and Michelle Noble is the Executive Director of the Council of Academic Hospitals of Ontario.

 

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Can computers help unlock the mysteries of the brain?

This story was originally published by Sean O’Malley, Senior Media Relations Specialist and co-host of the CAMH Podcast, on the CAMH website

There is perhaps no better way to illustrate how much the world of mental health research has changed in the 20-year history of CAMH than to look at the work being done today by Dr. Sean Hill’s team at the Krembil Centre for Neuroinformatics.

Consider what happened in 1997, the year before CAMH was created. That was when Deep Blue, a supercomputer created by IBM, defeated the world’s best chess player Gary Kasparov, marking a seminal event in the history of our relationship with technology. Today, the free chess app on my smart phone could probably beat Deep Blue.

For fans of the dystopian Terminator movie franchise, Deep Blue’s victory over Team Human signaled the beginning of the end for humanity as we know it.

But for young scientists like Dr. Hill, it raised the same question he had been asking since he tried his first PC at the age of eight: how much smarter could we make these machines? Could we make them smart enough to unlock the mysteries of the brains of the people who created them?

CAMH podcast with Dr. Sean Hill neuroinformatics
Dr. Sean Hill, Director of CAMH’s Krembil Centre for Neuroinformatics and CAMH podcast co-hosts Dr. David Goldbloom and Sean O’Malley discuss the past, present and future of neuroinformatics.

Yes, Dr. Hill began coding when he was eight, inspired by something called a TRS-80 that his older brother’s high school had purchased at a local Radio Shack and let his brother bring home to their family farm in rural Maine.

“In the winter when it was cold and dark…there was this whole new world you could discover in a box,” says Hill. “To me it was an opportunity to be incredibly creative.”

From a neuroscience perspective, the answer to 8-year-old Sean Hill’s question about computers and the brain increasingly appears to be ‘yes’ in a way we could only have imagined in CAMH’s early days. And that could have profound implications for how we diagnose and treat mental illness in the future.

“We saw in 2005 that by 2025, a supercomputer would be built that could simulate brain circuitry the scale of the human brain,” says Dr. Hill in the latest episode of the CAMH Podcast.

That prediction ended up being off but not by much – that supercomputer is now expected to be ready in the next two years.

Just in time for Dr. Hill to apply that technology breakthrough to his work at CAMH.

After devoting much of his career to this intersection between computers and neuroscience, most recently at the prestigious Blue Brain Project in Switzerland, what most excites Dr. Hill about coming to CAMH is that he can now apply the theoretical power of big data to the flesh and blood world of patient care.

 

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CAMH is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

Healthy Aging: 100 Years of Research and Care at Baycrest

“I just plough through, that’s something I learned from my mom. Just plough through,” says Barbara Schechter, a young caregiver featured in CBC’s recent documentary, The Caregivers Club, which takes an intimate and compassionate look at the lives of four caregivers and their loved ones living with dementia. The families are also part of the Baycrest Health Sciences community in Toronto.

With three young children and a full time job, Barbara is also a caregiver for her mother. “The only thing that gets you through the day is how you’re going to manage and how you’re going to make your mom safe,” says Barbara in the documentary.

There are currently 564,000 Canadians living with dementia, and that number is expected to double by 2031. As Canada’s population ages, more and better care is needed.

Baycrest Health SciencesThat’s what drives the researchers at Baycrest Health Sciences.

Baycrest is ranked as one of the most research-intensive hospitals in Canada and is a member of the Council of Academic Hospitals of Ontario, which represents Ontario’s research hospitals. Research hospitals play a unique and vital role in Ontario’s health system, providing advanced patient care services, training the healthcare workforce, and conducting leading-edge research to discover tomorrow’s care today. They generate the expertise and evidence to drive change as system leaders, building a healthier, wealthier, smarter Ontario.

And Baycrest is doing just that. Its Rotman Research Institute is among the world’s top research institutes in cognitive neuroscience.  The Centre for Aging and Brain Health Innovation, led by Baycrest Health Sciences, helps to accelerate brain health and aging solutions. Together, Baycrest is advancing dementia care for patients locally and globally, discovering better ways to diagnose, prevent and treat dementia and other brain disorders.

Research at Baycrest is part of a continuous cycle, where foundational brain research leads to clinical testing, which leads to innovations supporting healthy aging, which leads to more questions about the fundamental mechanisms of the brain.

Is my memory normal? At-home assessments and iPad apps  

Early detection and prevention of memory problems and cognitive impairment is a major area of focus at Baycrest. Cogniciti, a digital health company led by Baycrest researchers, is empowering adults to assess their memory in the comfort of their own homes. Free, private and clinically researched, the digital brain health assessment has helped more than 60,000 adults answer the question, “Is my memory normal or should I see my doctor?”

Test-takers age 40 and up solve a series of evidence-based puzzles, including shape matching, face and name matching, and a number-letter alternating test. Based on performance, they receive a memory report and may be advised to connect with their family doctor for next steps in care.  Through the brain health assessment, Cogniciti provides researchers access to a rich pool of interested volunteers to help advance memory research.

Another initiative accelerating research into Alzheimer’s and dementia treatments is Baycrest’s work with the Toronto Dementia Research Alliance (TDRA). The Sam and Ida Ross Memory Clinic at Baycrest is the initial pilot site for the newly developed Toronto Cognitive Assessment (TorCA), which utilizes an iPad to capture anonymous patient information and pools it onto a secure, research recruitment database that will be shared amongst TDRA memory clinics. This data will allow scientists to widen their pool of research subjects and easily identify and recruit consenting subjects who match the criteria for their dementia studies.

The TorCA is a sensitive tool that can identify patients at risk of dementia earlier. The assessment not only informs research on detection of memory-related conditions, it also saves costs for the health system and saves patients from having to pursue unnecessary cognitive tests.

Currently, Ontario patients concerned with cognitive impairment receive assessments from specialists. The TorCA iPad app is a game changer, allowing any health care professional to assess patients upfront and determine whether they need to pursue a more lengthy and resource intensive neuropsychology exam. The hope is that this tool will soon be clinically available across TDRA hospital sites within Toronto – and beyond— free of charge.

Getting a glimpse into a brain with dementia

What if you could detect the minute changes that occur in the brain Alzheimer's transcranial stimulationover the course of a person’s life? Researchers at Baycrest are getting the chance to do just that by using magnetic resonance imaging (MRI) to study the aging brain, including brains with very early dementia.

Cognitive tests, similar to the Toronto Cognitive Assessment, led Dr. Rosanna Olsen and her team to wonder whether physical differences could be detected in the brains of healthy adults who scored poorly compared to those who scored well.

Her cross-sectional study found that people who scored lower on cognitive tests had a smaller “memory region” of the brain – the same region that is first affected in Alzheimer’s disease. This finding has allowed researchers to use both memory region brain measures and low cognitive test scores as biomarkers (a biological flag) for Alzheimer’s disease, which is a big step forward for the detection and prevention of dementia.

Innovative treatment for older adults with depression and Alzheimer’s disease

Up to 70% of people living with Alzheimer’s disease also suffer from depression, which does not typically respond to standard antidepressant treatments. Dr. Linda Mah and Dr. Jed Meltzer are using a non-invasive procedure called transcranial magnetic stimulation (TMS) to reduce symptoms of depression in older adults with Alzheimer’s.

TMS uses magnetic fields to stimulate or inhibit neurons in the brain. Although TMS is approved as a treatment for depression, researchers are aiming to treat other neurologic and psychiatric conditions. Drs. Mah and Meltzer will evaluate the effects of TMS on both mood and memory in Alzheimer’s patients who also suffer from clinical depression. For Alzheimer’s patients, this could mean tapping into brain stimulation to treat their symptoms.

Patient and family care driving research

Research at Baycrest goes both ways. Not only is evidence informing how clinicians, occupational therapists, personal support workers and volunteers care for Baycrest clients, but researchers are also evaluating services to ensure high quality care and support.

Baycrest dementia arts therapyThe Road to Connection program is a great example of this. It’s an arts-based program that brings together caregivers and their partners with dementia for creative sessions and discussion. The program empowers dementia patients to tap into their creative skills while serving as a support group for caregivers.  On top of that, the program gives caregivers an opportunity to celebrate their partners through the art they have created and come away with a shared, meaningful experience.

“We could come back together at the end of the day with something for both of us,” said one caregiver participating in the program. “There aren’t many programs like this one that allow caregivers to meet and share without leaving loved ones behind.”

Baycrest researchers are evaluating the Road to Connection program with the hope of duplicating it across other sites within the Baycrest community and in Ontario.

Baycrest researchers have evaluated and helped redesign volunteer programs to improve resident engagement in Baycrest’s long-term care facility, the Apotex Centre. The Program for Leisure Engagement for Active and Spontaneous Experiences (PLEASE) is an evidence-based model that trains volunteers to work one-on-one and in small groups with residents, when they ask the simple question, “What do you want to do today?” The evaluation found that the PLEASE program enhanced the abilities and personhood of residents – more smiling, talking and engagement. Researchers are also exploring the use of volunteer visits to help older adults with dementia preserve or improve their thinking abilities.

This work helps long-term care homes incorporate cost-effective programs to improve care for residents with dementia and create new roles for volunteers working with older adults.

A century of excellence in complex care, research and training

The world’s population is aging rapidly, and Baycrest has the expertise to deliver proactive solutions. Now in its centennial year, Baycrest has spent 100 years pioneering the science of health and aging.

Baycrest provides compassionate, specialized care, conducts cutting-edge cognitive neuroscience research, commercializes innovative solutions, and trains the next generation of health care professionals with the skills needed to support and respond to the diverse and complex needs of older adults.

As a global leader, Baycrest’s work is contributing to a healthier, wealthier, and smarter future for Ontario and beyond.

 

Why does health research matter to us? We know that it generates new discoveries, better care, and greater efficiency all while contributing to our knowledge-based economy. That’s how it makes Ontario healthier, wealthier and smarter today. Investing in research hospitals will help us continue building a healthier, wealthier, smarter Ontario. Discover more health research and patient stories by signing up for our monthly newsletter or joining the #onHWS conversation on Twitter.

Group feature photo was taken during CAHO’s Healthier, Wealthier, Smarter Field Trip to Baycrest Health Sciences. Read our other Healthier, Wealthier, Smarter Field Trips here.

 

Research shows that preemie babies do better when families are involved in care

Dr. Karel O’Brien, with mother, Amy, whose twins were born at 23 weeks, 5 days.

An international study led by Sinai Health System researchers shows that a Family Integrated Care model of treating the tiniest and most fragile babies helps improve the wellbeing of both children and parents.

Neonatal intensive care units (NICU) in Canada, Australia and New Zealand adopted the Family Integrated Care model, developed at Mount Sinai Hospital by Dr. Shoo Lee, and found that it improved the wellbeing of both preemie babies and their parents compared to standard care:

  • Improved weight gain among preterm infants
  • Better breastfeeding
  • Reduced parental stress and anxiety

When Amy, a new mother of twins found herself in the Mount Sinai NICU with babies born at 23 weeks and 5 days, she felt scared and overwhelmed by how fragile the babies were. Still in the NICU after almost three months, she has found comfort in being part of the Family Integrated Care model. “It really allowed me to feel like a mother. Being with my babies all day, I know instinctively if something is wrong or what they need, and can report that to the doctors and nurses. They are getting stronger and stronger every day, and this model of care has made me believe that when I bring them home, I’ll be able to confidently care for them.”

The study was led by Mount Sinai Hospital researchers Dr. Karel O’Brien, neonatologist, and Dr. Shoo Lee, Chief of Pediatrics. Recently published in the prestigious journal, The Lancet Child & Adolescent Health, it involved nearly 1,800 infants born at 33 weeks gestation or earlier across 26 NICU units.

What is Family Integrated Care?

Family Integrated Care actively involves parents in the care of their newborns, including giving oral medicine, feeding, taking their temperate and taking part in ward rounds.

Mount Sinai supports parents in spending six hours a day, at least five days a week with their babies by providing them with a rest space and sleeping room, comfortable reclining chairs at the bedside and nurses trained in family support.

“Parents are too often perceived as visitors to the intensive care unit. Our findings challenge this approach and show the benefits to both infants and their families of incorporating parents as key members of the infant’s health care team, and helping parents to assume the role of primary caregiver as soon as possible,” says Dr. Karel O’Brien, who leads the Family Integrated Care Program at Mount Sinai.

Real impact for preemies and parents

“How care is provided to the family, not just the infant, has a positive effect on the wellbeing of both infant and family,” says Dr O’Brien. “Weight gain, breastfeeding and reduced parental stress and anxiety are all associated with positive neurodevelopmental outcomes, suggesting that integrating parents into the care of infants at this early stage could potentially have longer-term benefits.”

At 21 days, infants in the Family Integrated Care group had put on more weight and had higher average daily weight gain (26.7g vs 24.8g), compared to the standard care group. Additionally, parents in the Family Integrated Care group had lower levels of stress and anxiety, compared to the standard care group. Once discharged, mothers were more likely to breastfeed frequently (more than 6 feeds a day), compared to the standard care group (70% vs 63% ).There were no differences in rates of mortality, duration of oxygen therapy or hospital stay.

“The results of this trial are encouraging indeed. Not only is this an example of innovative care developed here in our hospital, it is an exceptional example of how a good idea can be shared across the country and around the world,” says Dr. Lee.  “This was truly a collaborative effort with participating NICU’s, parents, and the whole care team.”

Read more about this story in the media.

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Sinai Health System is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

Making Healthcare Smarter: Seeing Medical Ethics Differently

Lisa Boivin is a member of the Deninu Kue First Nation in the Northwest Territories. She paints image-based stories that explore the gap between medical and land-based Dene ethics. She is a graduate student at the Rehabilitation Sciences Institute at U of T’s Faculty of Medicine.

Lisa recently presented her art and her story at the 12th Annual Bloorview Research Institute Symposium, including her image above, called Holding Thunderbird. She also sat down with BLOOM, the digital magazine of Holland Bloorview Kids Rehabilitation Hospital, to share her story. Read the complete, original interview: Lisa Boivin paints stories about medical ethics beyond words.

BLOOM: Why did you study bioethics as an undergrad?

Lisa Boivin: I fell in love with the element of story—that ethics are held in the story of clinical narratives. As a bioethics student, we have all of this academic rhetoric around ethics. But I learned that the ethics are anchored in the story of the patient.

BLOOM: You mean that the most important ethics are found in a patient perspective?

Lisa Boivin: Yes. Clinical and personal hardship helped me to see ethics differently—things like informed consent. I had to read a lot of patient narratives to have a fundamental understanding of the sacred ceremony of informed consent. That’s both parties coming together with complete understanding of one another’s situation, and a balance in decision-making. And that’s something that’s hard to accomplish, for basic reasons. The patient isn’t a clinician, and doesn’t have the expertise that a doctor has in terms of the biology of what’s happening. But there’s also such a tremendous power imbalance between the two parties.

BLOOM: Can you describe your art?

Lisa Boivin: I came to know image-based storytelling through an inability to articulate academic thought from an Indigenous perspective. I’m not a classically-trained artist. I’ve only painted for three years. I’m a ‘60’s scoop survivor from two generations of residential school survivors.

One of my professors asked me to write a paper on colonialism. I couldn’t do it. So I painted it. The paintings are born out of necessity, and are a way to communicate Indigenous perspectives to non-Indigenous colleagues. The one featured above is called Holding Thunderbird.

BLOOM: Can you describe what it means?

Lisa Boivin: From my teachings, Thunderbird is a very powerful being, the carrier of knowledge and the conduit between the creator and the people. Thunderbird is also the carrier of justice. With that responsibility comes great frustration.

I don’t feel knowledgeable, I simply carry a knowledge that is unfolding in images I’m creating. I find myself frustrated often. Holding Thunderbird relates to me as a person who struggles in the academy, where I’m constantly expected to fit my Dene knowledge into a colonial format. That’s extremely oppressive and harmful to me.

There are times when bioscience research clashes with Indigenous research methodologies. This painting was created to thank a professor who was helpful to me at a residency. The woman holding Thunderbird is the professor and all the flowers represent her knowledge. She’s keeping Thunderbird from flying away, and comforting Thunderbird.

She’s the first person that’s never asked me to change or do anything that would be harmful to the Indigenous knowledge in the images. That residency provided me with a healing, and a security I had never known.

For me, the painting represents the notion that we all have our own knowledge and our own knowledge systems. And for us to grow, we need support from people who have power in our lives. It can be a professor, a clinician, or a leader in our community. But the idea is someone holding space for us, as we are.

BLOOM: This reminds me of how difficult it can be to talk about disability in a culture that doesn’t value it. It’s almost like I don’t have the words, sometimes, or I feel like I’m put on the defensive, in trying to convince people that there is value in a different way of living.

Lisa Boivin: This is the kind of damage that the medical model does to people with differences. What I’ve learned from my family is that an Indigenous perspective of wellness is much larger than the narrow perspective of the medical model. The medical model measures wellness as the absence of disease. From my Dene perspective, the measure of wellness is the ability to interact with the land.

My father had polio as an infant, and during his childhood he was seen as someone who was disabled. But when my father came home from residential school, he got on a dog sled. He became a champion dog racer and was no longer disabled. He didn’t consider himself disabled in any way. He just navigated the world differently.

I’m someone who has been diagnosed with a learning difference or cognitive disability. I have a different way of translating knowledge. I’m an image-based storyteller. There’s a reason I can’t interact with certain academic theories. The images came to life and were born out of necessity. If I could translate knowledge in an academic way, I would never have learned how to paint.

BLOOM: You spoke about your dad’s physical disability, and how through dog sledding, he was able. How do Indigenous people view intellectual disability or other types of disability?

Lisa Boivin: Any Indigenous person would want people to embrace who they are, or to create their own idea of wellness. My dad walked with a limp and had varying degrees of mobility, but that never affected his understanding of his wellness.

My wellness comes from an ability to interact with the land—to understand where I am in the world, and how I fit in and what my duties are. My duty is to be an image-based storyteller.

In the Navaho literature, they don’t present an idea of correcting behaviour. You are who you are, and you contribute where you can.

You move differently, you speak differently. The eight-year-old boy in me says: ‘You have a difference, you do different stuff.’

BLOOM: What do you hope to do in the future?

Lisa Boivin: I want to share information about Canada’s colonial history and how that creates clinical barriers between a clinician or therapist and a patient.

There are centuries of failed relationships between what would become Canadian institutions and Indigenous people. For hundreds of years, there’s broken promises, institutional racism and mistrust. And this still takes place in medicine today. I am horrified when I read stories in the media about Indigenous patients who die in ERs because they’re seen as drunk or drug-seeking. When an Indigenous patient sees that in a media story, it influences how they interact with a doctor.

Medicine has also been used as an instrument to remove Indigenous children from their homes, because it’s perceived that Indigenous parents can’t look after their children. This was certainly the case for my father, who had over a dozen surgeries to correct his mobility impairment.

I’d like to promote an understanding of a wider notion of wellness. As we spoke of earlier, the medical model is very simplistic. It’s the presence or absence of disease. There are wider models of wellness.

For many Indigenous people, the ability to interact with the land is a measure of wellness. An Indigenous worldview includes the land, animals, community and nature. An ability to contribute to community is central to wellness, and that can be any contribution.

I’m a health-care educator and I will continue using arts-based practice to educate about colonialism and how that exists in medicine.

 

Related Stories

Holland Bloorview Kids Rehabilitation Hospital is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.