Celebrating ACH100
Research is Care. Care is Research.
In celebration of the Alberta Children's Hospital turning 100, ACHRI is sharing the pride, vision and excitement for all that our research teams have and will achieve in partnership with children, families and communities.
Improving quality and saving costs through Alberta Family Integrated Care
An innovative model of care for neonatal intensive care units
A hundred years ago, without the benefit of today’s antibiotics, technology, and medications, when babies were born preterm they were separated from their parents. If the babies lived, medical professionals provided neonatal intensive care for months. When the babies were well enough to go home, their parents did not know them. Mid-century it was recognized that parents are vital to a child's development from birth. This became known as family centred care (FCC). Because FCC is a philosophy of care, it is difficult to operationalize and measure outcomes. With advice advice from Alberta nurses and neonatologists, The Alberta Family Integrated Care (FICare) Team has created practical tools and strategies to integrate parents into the neonatal intensive care team. Parents are empowered to care for their child while in the NICU. The vision of integrating parents of critically ill babies into the neonatal intensive care team is what drives the FICare Team. The model has improved healthcare system practice for NICUs, significantly improving the quality of care all while saving costs.
The FICare story begins by connecting with neonatal healthcare providers (HCP) and identifying their priorities for care. Our team identified gaps in other models of care, adapted one model to the Alberta context, and evaluated healthcare quality and costs. This new model, we called Alberta Family Integrated Care, signals an intention to integrate families with the NICU team. With Alberta Family Integrated Care, which includes standardized implementation processes and training modules for all NICU staff, babies were discharged from NICU 2.5 days sooner, the quality of care improved, parents were less stressed and more confident, and the health system saved costs. After discharge, babies who received the new model of care had a lower risk of developmental delay. With these positive results, Alberta Family Integrated Care was adopted in all 14 NICUs across Alberta, demonstrating ongoing cost savings for the province. For Alberta, the province has strategies to sustain Alberta Family Integrated Care training for new hires, embedding continuous monitoring of key indicators in a provincial dashboard and monitoring fidelity. With post-COVID concerns about the quality of care in NICUs and hospital budget overruns, all Canadian NICUs can benefit from Alberta Family Integrated Care.
Knowledge to Empower
"I am a clinician scientist and Director of the Alberta Children’s Epilepsy Program. My research aims to bring new diagnostic tools and treatments to children with rare and difficult to treat epilepsies.
Each seizure causes anxiety and a perceived loss of control for affected families. In these cases, knowledge about seizures and epilepsy can empower, but is often not readily available. To address this gap – something I am very passionate about - we have developed a program in close collaboration with kids, families and health care providers called Knowledge to Empower (K2E). It’s a virtual interactive training platform with short, accessible, and engaging videos for different age groups impacted by epilepsy.
The videos feature two superneurons - Zippy and Zappy - one has epilepsy and likes to start seizures and the other one is his best friend, who is healthy. Created by Paola Santoscoy, a Research Associate on our team, Zippy and Zappy were selected by kids as relatable characters. Their big eyes, superhero capes and little battery of energy levels - were thoughtfully developed through engagement with stakeholder groups.
Zippy and Zappy are also adapted for all kinds of awareness activities, including collaboration with Epilepsy Association of Calgary, providing outreach to schools (videos and brain awareness week). These connections provide new learning opportunities for families and strengthen community awareness and engagement around pediatric epilepsy.
I believe that knowledge empowers. Everyone should have access to easy and entertaining information about their condition. Continued partnerships between our community and clinical programs at Alberta Children’s Hospital is work that I am proud to be a part of – and something that I think will continue to grow over the next 100 years."
Dr. Susan Samuel and CHILDNEPH team
Dr. Susan Samuel and CHILDNEPH team
We Can Do Better. A Call to Action
Dr. Susan Samuel, CHILDNEPH Principal Investigator:
When I was a resident at SickKids, I remember a participant asked a question during teaching rounds about managing their practice for nephrotic syndrome, a relapsing disease that occurs in young children. The answer was along the lines of ‘we don't really know, and we can’t do better than this’. I remember thinking ‘why can't we do better?’ There had been very little advance in the understanding of pathogenesis or treatment protocols for decades. That's really the moment I really felt the call to action to do something for nephrotic syndrome.
When I came to Calgary 15 years ago there were very few patients with nephrotic syndrome, but it made me realize that because it's a rare disease we cannot work in isolation – that inspired us to collaborate. With that, we launched CHILDNEPH – Canadian Childhood Nephrotic Syndrome Project. We are a team that focuses on finding evidence-based treatments and care for children with Nephrotic Syndrome.
Dr. Maneka Perinpanayagam, Program Manager:
I joined the CHILDNEPH research group in 2016. As a scientist, I am driven by evidence – so I ask myself ‘why are we treating these kids this way’? We need to do better. I want to support the movement towards personalized medicine. I am so proud of the work we’ve done so far but there is so much left to do. We are fortunate to collaborate with our patient partners because it's not just the scientists and the physicians making the decisions and changing the course of the research, it's also the families. They are the ones who go through this disease in real time. We need their input. It's been a rewarding experience so far. Every day we learn something different and it's a new challenge that we must overcome.
Claudia Harding, Patient Partner:
My daughter was diagnosed with nephrotic syndrome when she was about two and a half. We went to ACH and started on the standard treatment plan, but things went south, and she ended up in hospital for a while. It made me realize that there's so much that we really don't know about this disease. When the opportunity came available to act as a patient partner, it was important to me to be able to do anything that I could to help other kids and families. I hope that we can get to a place where we can really target treatment and care so that kids don’t have to carry this throughout their whole life.
Roxana Barabani, Research Assistant:
Everyone on the team plays an important role in achieving our goals. When I am in the lab processing samples, I know this small step can have such a big impact and I am so happy to be part of that. Each of the samples that we process from families contributes new information to advance science in this area.
I've always said this right from the beginning, I don't think I will be the person who discovers the molecular targets or unlocks the mystery of this syndrome, but I am very determined, and it would be my honor to be a facilitator in that journey of discovery. I want to put in the groundwork to help others and to help others find the exact mechanisms so that when a patient comes in, they can be given precision therapy. By learning from each patient, we can iteratively improve care.
Claudia Harding and her daughter
Towards a future of safe and effective treatment for every child, no matter the diagnosis
I am a clinician scientist in pediatric oncology at the Alberta Children’s Hospital and a UCalgary researcher. My focus is finding new cancer therapies for kids that do not respond to conventional treatments. Even though we are doing much better in curing pediatric cancers, we still have 10 to 15 percent of children who come to a point that we really don't have anything to safely and effectively treat them. When I started at ACH almost 20 years ago that became my focus, to bring new clinical trials to our community, to give kids and families new hope.
I am the local principal investigator for the clinical trials group POETIC (Pediatric Oncology Experimental Therapeutics Consortium). Our mandate is to get therapies to kids as fast as we can. We do this by studying cancer treatments shown to be active in adults and exploring the safety and effectiveness in children with currently incurable cancers. This collaborative work has brought recognition for our centre and new treatments for our patients. Many children across North America are getting treated on protocols that we have contributed to here in Calgary.
We are a team here – and I believe it is very important to teach the next generation of doctors and scientists to carry this work forward. My lab is a diverse team of students, technicians, fellows, and even members who had encountered cancer themselves. As a clinician and scientist, I am very proud of the young people who trained with us and have gone on to have extraordinary clinical and academic paths to work to help children with cancer and their families.
More ACH100 Stories
"As a medical geneticist, I see patients with rare genetic diseases. My special research interest is rare complex immune dysregulation disorders (CIDD) - this group of disorders cause genetic changes result in the immune system targeting the body itself. Kids with these disorders present with many different symptoms and end up going to multiple clinicians and specialists in search of a diagnosis. That was the inspiration to create the complex immune dysregulation program, a clinical research program within ACH and ACHRI. As part of the program, I co-lead monthly clinical rounds. These children touch so many different specialties it's important our approach to care is collaborative. Our monthly clinical rounds are a powerful way of understanding what is going on and expediting a child’s care. A willingness to work together is what makes the department here so strong and unique. We are only beginning to discover all the genes that cause CIDD. Five or ten years ago we were checking for a handful of genes, now there are panels with over 400 genes and almost every month there's a new condition being described. By enrolling kids into our research, we get them to a diagnosis more quickly. Once they have a diagnosis, children can be immediately given targeted therapy preventing life-long disability. Our vision is to create an internationally recognized research program and for Calgary to become a leader in CIDD in Canada and around the world."
"I have always had a keen interest in the mind-body-spirit connection, which I started exploring in my physical education degree and in my work with children and families over nearly 30 years. As a therapist, when I observed the root causes of suffering they often seemed connected to spiritual aspects. There’s a lot of research around spirituality as a protective factor in mental health and as a critical factor when moving through trauma and grief. If we have a better understanding of what spirituality means to children, how they engage in it, and how we can foster it, then we can have better mental health outcomes for kids and families. My long-term hope is to support practitioners to integrate an understanding of how we address mental health through spirituality into their practice. I designed a course on spirituality in social work practice. I'm working on embedding this curriculum into the BSW and MSW programs as well as supporting other professions to do the same. We are also applying this lens to field education. This work is the first of its kind in Canada and a way to transform how people are teaching, learning, and applying this knowledge in the field. I'm inspired by the fact that I'm mentoring researchers, clinicians and practitioners in this area. We are planting seeds that 100 years from now will become a forest. I hope we'll see more meditation in the classroom, more children and teens feeling empowered to express and explore freely, and maybe we will see less suffering in the world. I really look forward to seeing where this all goes."
- Dr. Heather M Boynton
"Congratulations on the 100-year celebration. I have been working on the Alberta Children’s Hospital Foundation ACHF/ACHRI agenda for about 20% of this time! From the beginning my career at the old Children’s Hospital developing the Decision Support Research Team, to the development of a research program in preterm birth, maternal mental health, and child development, to leading the All Our Families Cohort (AoF), ACHF has been key to success. It has been a privilege to collaborate with, and mentor, so many talented people.
My research focuses on understanding the links between and influences of society, family and maternal well being on child development. The findings of our work can be applied to program development, policy, and practice to ensure children have the best chances of success. The longitudinal nature of this work with the AoF cohort would not be feasible without ACHF and ACHRI.
Over the years, I have had the pleasure of ongoing collaboration with community partners and stakeholder organizations including United Way, Calgary Reads, Centre for Sexuality and others. It has been profoundly rewarding to have expert input into my research program from those meeting the needs of children and families daily. These partnerships have enabled the development of evidence of contemporary relevance. I look forward to seeing even more relationships with our important community partners to further accelerate the evidence-to-practice cycle and to really make a difference for our families and community."
"I am an imaging scientist and one area of my research uses MRI scanners to look at brain chemicals. I study pediatric migraine, its neurochemical basis and the relationship between child development and migraine. It is increasingly apparent pediatric migraine cannot be treated as migraine in adults. My work shows that the chemical glutamate is lower in the visual cortex in children with migraine compared to controls, by contrast, adults’ glutamate is higher in migraine.
Our team has demonstrated relationships between brain chemicals and migraine severity and the phase of the migraine cycle. We have also shown there are developmental changes in connectivity between brain regions in children with migraine.
In collaboration with Dr. Serena Orr, I continue to investigate the underlying physiology of pediatric migraine through looking at the cyclical nature of migraine and changes with child development. This research will inform new treatments and approaches for pediatric migraine. I am inspired by the advanced and sophisticated methods we are using. The next generations of researchers will be able to build on our knowledge and improve methods to study all clinical conditions and development."
"Currently a PhD student in the Cumming School of Medicine, my research is focused how the design of our cities can encourage healthy behaviours and prevent injury and illness throughout the lifespan.
Over my career, I hope to reduce the number of injuries and fatalities in children and prevent chronic health conditions. My research seeks to make our cities healthier and safer for children by reducing their risk of being injured or killed by motor-vehicles and making it safer for them to be physically active in community and public spaces. By working with local municipalities, we can inform the development of road networks that promote health around our schools and public spaces. I hope this helps to increase the number of kids able to spend their time outside. I think our cities can look quite different in 100 years, and I am encouraged by how that will improve life for children growing up. I can imagine a city where my kids or grandkids can be safe while playing outside, and I want to help make that happen."
- Tate HubkaRao, PhD candidate (supervisor Dr. Brent Hagel)
"When I started in the Behavioural Research Unit at the Alberta Children’s Hospital, over thirty years ago, we were a very small, but impactful research group. What inspires me the most, is the number of 'now' faculty members I have had to the opportunity to mentor with their first grants and publications. Since then, their careers have soared. I am just so proud I have been a part of building the ACHRI community.
My research looks at how prenatal and early childhood environments influence children’s brains and behaviour. We know that kids and families dealing with neurodevelopmental and mental health challenges in the early years are going to be more at risk for future mental health problems and at higher risk for health problems in general throughout their lifespan. I see research and care shifting towards early intervention at the community level. We need to support children, families, and communities through policies and community level interventions – this will have the most impact and provide the best possible foundations for life."
"I am the Director of the Pediatric ICU (PICU) research program at the ACH. We conduct multiple multi-site research projects with other PICU centres in Canada. I'm the first and only Nurse Practitioner to run a PICU research program in Canada.
My doctoral work is focused on cuddling as an intervention for pain, agitation, and delirium management in the PICU. In the neonatal ICU it is common for babies to be cuddled as part of care, but it doesn’t typically happen in the PICU. Research has shown comfort holding will help our patients recover faster and have better long-term outcomes. It’s not always about asking the complex research questions but asking the questions that matter to the people doing and receiving the care.
My vision is that research be driven and implemented by every single member of the health care team. I want everyone on the team to feel empowered to ask ‘is this the best way to care for my patient?’. When the whole team is involved in research, we strengthen practice and improve our ability to bring the best evidence to the bedside."
"My lab puts neuroscience to work for youth suffering from mental illness. We've pioneered the application of brain stimulation technologies to treat mental health disorders influencing work in the field worldwide. We've built a robust program to incubate and test new brain stimulation treatments. Our work is needed now more than ever.
Few neuroscientists can say they helped change clinical practice on a provincial scale. As we develop new interventions in youth, we also have the experience to bring those to bear in the clinic. This means we can move past simply publishing our findings and actually put them to work."
"We work directly with children and families to create sophisticated brain images to understand how brain structure and function can support better mental health.
I am working on visually demonstrating how our brains are different, with the hope to understand how targeted interventions can physically change the way our brain functions. Imagine a child being able to see ‘hey, I can change the way my brain works through medication or treatment or changing my lifestyle’. That tangible MRI image will support long term change in how kids think and how kids feel. That's where I want to go with this work.
Now is the time for action and for different approaches to improve life-long mental health."
- Dr. Kathryn Manning (supervisor Dr. Catherine Lebel)
"Our research program enhances life participation for disabled children through patient-centred applications of advanced neurotechnologies. I am proud of the dedication our trainees and the impact their hard work has had on the lives of children and their families. Over 15 years, this has included >100 trainees across dozens of diverse backgrounds and programs. Nearly all have presented their work at scientific conferences and published impactful papers. Many have achieved highly competitive awards and recognitions including $3M in trainee funding and prestigious national training awards.
Our trainees made real connections with kids and families, taking with them a lasting appreciation of the value of child health. This progress was only possible through the unique clinical, academic, and community environments present in Calgary."
