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.

 

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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.

HWS Field Trips: Holland Bloorview Kids Rehabilitation Hospital

Research hospitals play a leading role in making Ontario healthier, wealthier, and smarter. To demonstrate the world-class hospital-based research happening across our province, we took a field trip to Holland Bloorview’s research institute, where researchers are creating a world of possibility for kids and youth with disability and their families.

This blog post highlights only a fraction of the research we learned about on our field trip – but we also live tweeted every minute! To take the full live-tweeted tour, scroll through our Storify story here.

Patient Engaged Research

We kicked off our tour by meeting with Suzanne Jorisch, a family leader on the hospital’s Research Family Engagement Committee (RFEC) who is also a long-time health research champion. Suzanne’s son Wesley first came to Holland Bloorview in 2010 with a brain injury. It wasn’t long before Suzanne and Wesley started getting involved in research projects underway at Holland Bloorview. “They started performing miracles,” said Suzanne, “and their research has given me tremendous hope that my son will have new opportunities for his future.”

Since then, Suzanne has become a strong voice for the value of paediatric research at Holland Bloorview’s research institute – and a champion for partnership with patients, families and caregivers. Together with hospital leaders like Lori Beesley, a family-centred care specialist, she is working to support standards and processes for meaningful family-researcher partnerships.

“Patient engagement isn’t something that can be done off the side of your desk,” said Lori. “We need to embed it into our research culture and process.” In her over 20 years of navigating the Canadian developmental and disability health sector, Lori has fostered numerous partnerships between clients, families, and staff, using the principles of client and family-centred care. She also cared for her son Mitchell who has Fragile X Syndrome. At Holland Bloorview, Lori leads both the Family Leadership Program and RFEC. “The Research Family Engagement Committee is not only leading patient and family engagement in research at Holland Bloorview, but it’s creating best practices for organizations around the world.”

Research Family Engagement Committee Holland Bloorview
 “At Holland Bloorview, they don’t look through you, they look with you,” said Suzanne Jorisch of her experience being involved in research at Holland Bloorview. L-R: Karen Michell, Executive Director, CAHO, Suzanne Jorisch, Family Leader, Lori Beesley, Family-Centred Care Specialist.

STOP 1: PEARL and PROPEL labs

Making therapy fun: Our next stop focused on innovative solutions that improve mobility for kids with disabilities. We met Ajmal Khan and Alexander Hodge, two members of the PEARL (Possibility Engineering and Research lab) team who work with Dr. Elaine Biddiss to develop mixed reality therapy games and interactive play spaces that are accessible to young people of all abilities. Immersive and interactive mixed reality games like Botley’s Bootle Blast help to make reaching rehabilitation therapy goals fun. For example, one game might help to strengthen shoulder mobility, while another might focus on strengthening fine motor skills. And as a bonus, the games can be played at home with friends!

Botley's Bootle Blast at Holland Bloorview
L-R: Ajmal Khan, Research Manager, and Alexander Hodge, Game Developer, introduce Botley’s Bootle Blast, a mixed reality therapy game.

Ontario-grown innovation: Dr. Jan Andrysek and his team at the PROPEL lab (Paediatrics, Rehabilitation, Orthotics, Prosthetics, Engineering, Locomotion) developed and commercialized the All-Terrain Knee (AT-Knee). It’s a low-cost, high-functioning mechanical knee that’s already being sold in 21 countries by social enterprise, LegWorks. Post-doctoral student, Matt Leineweber explained that, compared to standard prosthetics, patients using the AT-Knee expend 40% less energy and have reported a reduced number of falls. The AT-Knee is a great example of how health research helps fuel our innovation economy and improve quality of life for patients in Ontario and beyond.

LegWorks AT-Knee demo at PROPEL lab at Holland Bloorview
L-R: Sam Shi, Masters Student, and Matt Leineweber, Postdoctoral Fellow, demo some of the innovations from the PROPEL lab

 STOP 2: ProFILE lab

Addressing weighty topics: Weight-related issues can be challenging for people to discuss openly with their doctors. It can be uncomfortable and emotional – especially when you’re managing other conditions. For children with disabilities, conversations about nutrition, physical activity and weight are important for maintaining a high quality of life. Interim vice president of research and scientist, Dr. Amy McPherson, and her team at the ProFILE lab (Promoting Fitness and Healthy Lifestyles for Everyone) are looking at how to better approach these tough conversations, so that kids, families and care providers can comfortably discuss how to best manage a healthy lifestyle.

Some evidence-based lessons gathered from the team’s research:

  • Start conversations early and discuss regularly
  • Include the right people in the conversation – kids, families or caregivers, care providers and others who may be relevant
  • Communicate trust and respect with active listening, open questions and a collaborative attitude

 Weight research at Holland BloorviewWeight research at Holland Bloorview 
L-R: Laura Hartman, Postdoctoral Fellow and Christine Provvidenza, Knowledge Translation Specialist, highlight their findings on fostering positive weight-related conversations between kids, families and care providers.

Read more from Dr. McPherson on healthy choices for kids with disabilities in Canadian Living.

STOP 3:  PRISM lab

A philosophy of strengths-based innovation: Researchers at the PRISM (Paediatric Rehabilitation Intelligent Systems Multidisciplinary) lab discover and evaluate innovative technology solutions that help kids with severe disabilities communicate and interact with the world around them. A guiding principle of their research is to let innovation start from a child’s strengths and asking how those strengths can be augmented to give the child a voice.

Fanny Hotze, Paediatric Assistive Technology Specialist, shows us how the Hummer works Alborz Rezazadeh and Rozhin Yousefi demonstrate EEG-based brain-computer interface technology.
L-R: Fanny Hotze, Paediatric Assistive Technology Specialist, shows us how the Hummer works /// PhD students Alborz Rezazadeh and Rozhin Yousefi demonstrate EEG-based brain-computer interface technology. 

The vocal cord vibration switch, also known as the Hummer, is a great example of this principle. It harnesses a non-verbal child’s ability to hum by translating vocal cord vibrations into binary control signals for computer-supported communication.

For other children, researchers are developing brain-computer interfaces that identify and communicate thoughts and intentions. PhD students Alborz Rezazadeh and Rozhin Yousef gave a live demonstration of how one such brain-computer interface can allow child with complex disabilities to interact with the world around them. By focusing his attention on a series of images on the computer screen, he gave commands that turned on lights, fans, music and more.

ScreenPlay Pit Stop!

In general, hospital waiting rooms can be a stressful experience for children and their families. Holland Bloorview has created the ScreenPlay – an interactive waiting room that is proven to reduce waiting room anxiety. Developed by scientist Dr. Elaine Biddiss and the PEARL lab team, ScreenPlay heralds the high-tech waiting room of the future.


Holland Bloorview’s President and CEO, Julia Hanigsberg, shows us how kids can generate, grow and shift colourful images on-screen when they step or wheel across the pressure-sensitive tiles.

STOP 4: Autism Research Centre

Self-managing anxiety: The Autism Research Centre (ARC) conducts research aimed at improving outcomes and quality of life for children with autism spectrum disorders (ASD) and their families. A highly diverse team (its expertise spans neurology, developmental pediatrics, psychology, psychometry, engineering, occupational therapy, speech and language pathology, and nursing) focuses on understanding the biology and symptoms of autism, developing novel interventions and investigating service delivery models.

Now in early commercialization stages, the Anxiety Meter is one such intervention, developed by scientists Drs. Azadeh Kushki and Evdokia Anagnostou. The app is designed to help kids with ASD better manage their anxiety by measuring their heart rate and converting it into a visual representation on a tablet and/or watch through the Anxiety Meter app.

Dr. Kushki and Stephanie Chow, Research Assistant at Holland Bloorview Autism Research Centre
“Kids with autism often don’t realize that they’re anxious,” explains Dr. Azadeh Kushki, scientist at the Autism Research Centre. “By helping them identify their anxiety, we can help them manage it.” (L-R, Dr. Kushki and Stephanie Chow, Research Assistant)

The Holli glasses are another example of cutting-edge innovation. They glasses interact with Google Glass technology to provide prompts and cues during social interaction, like ordering food in a restaurant. It holds the potential to complement traditional therapy and provide coaching over the long term.

Holli Glasses at Holland Bloorview Autism Research CentreHolli Glasses at Holland Bloorview Autism Research Centre
Harnessing Google Glass technology, the wearer sees prompts and responses on a tiny screen in the right corner of the glasses that aim to reduce anxiety and provide coaching during social interactions.

Read more about the Anxiety Meter, Holli and autism research at the Bloorview Research Institute in Today’s Parent.

STOP 5: Evidence to Care

Putting knowledge into practice: Using evidence-informed care is an expectation of all health care professionals in leading academic health sciences centers around the world, but it isn’t always easy to ensure that knowledge translation happens consistently.

The Evidence to Care team at Holland Bloorview, led by Dr. Shauna Kingsnorth, promotes knowledge translation by identifying the best available research evidence and developing strategies to influence care.

“We don’t want to reinvent the wheel,” said Dr. Shauna Kingsnorth, Manager, Evidence to Care. Holland Bloorview
“We don’t want to reinvent the wheel,” said Dr. Shauna Kingsnorth, Manager, Evidence to Care. “We want to package the existing evidence in a way that makes it accessible for clinicians and families.”

Case Study: 1 in 4 children with cerebral palsy experience chronic pain. The Chronic Pain Toolbox, developed by the Evidence to Care team, is an evidence-based best practice product to assist clinicians in their efforts to accurately assess chronic pain in children with disabilities, especially those with cerebral palsy.

At Holland Bloorview, we translate research into real life impact for kids and their families
HWS Field Trippers end their tour inspired by the health research underway at Holland Bloorview’s research institute and the impact it will have on kids and families today and tomorrow; locally and globally.

“At Holland Bloorview, we translate research into real life impact for kids and their families,” said President and CEO, Julia Hanigsberg.

After a morning of meaningful research and imaginative, boundary-pushing innovation, it’s clear that Holland Bloorview is serious about its mission to create a world of possibility. We want to extend our sincere thanks to our hosts at Holland Bloorview’s research institute and Holland Bloorview Kids Rehabilitation Hospital.

 

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 to build a healthier, wealthier, smarter Ontario tomorrow. Discover more health research and patient stories by signing up for our monthly newsletter or joining the #onHWS conversation on Twitter.

Read our other HWS Field Trips here.

 

Patients + Research: Jan Magee

Meet Jan:

Jan’s youngest son, Wesley, was born with cerebral palsy. She decided to get involved with the research that would make a difference for her son and her family, and today, she is the vice-chair of the Research Family Engagement Committee at Holland Bloorview Kids Rehabilitation Hospital.

Jan Magee, Member of the Research and Family Engagement Committee at Holland Bloorview Kids Rehabilitation Hospital
Jan and her son Wesley

Can you tell us a bit about yourself and your health story?

I am a proud mother of two wonderful boys. My youngest, Wesley (now 16 years old), was born 2 ½ months premature and diagnosed with cerebral palsy. The health care ‘journey’ from his birth has been a roller coaster. My son was hospitalized for almost three months after his birth, during which we spent time in three different hospitals. My son had an operation during that time as well, before he could come home.

He started occupational- and physio-therapy interventions shortly after, with many other therapies occurring throughout the years including Botox injections for his spasticity (when muscles are continuously contracted). He had surgery again when he was just 2 ½ years old and major orthopedic surgery at Sick Kids when he was 9. Following that surgery, he went through a three-month rehabilitation as an inpatient at Holland Bloorview Kids Rehabilitation Hospital and then as an outpatient for about a year. My son’s current health is stable, but we have many ongoing health concerns and appointments to ensure he is as healthy and pain-free as possible. Our biggest challenge now in our health care ‘journey’ is transitioning from pediatric to adult care and rehabilitation.

I also decided to become directly involved in the work of Holland Bloorview and got involved in the research family engagement committee (RFEC) as a family leader. My goal was to support and make recommendations on research to help make a difference in the lives of children with disabilities and their families based on my lived experiences. I am currently the vice-chair of the RFEC.

Why does health research matter to you?

Health research is critically important for all people with disabilities and it gives me hope that in the future, there will be new therapies, equipment and interventions that will allow people like my son to have the best quality of life possible and allow him to reach his full potential. Wesley has dreams of going to university, getting a job, getting married and travelling the world. With the research currently being done and plans for future research, these goals become more and more achievable for him.

How does health research contribute to a healthier Ontario?

There are so many ways that health research contributes to a healthier Ontario. For example, it leads to therapies and/or interventions that help people with physical disabilities live with less chronic pain and support them in reaching their full potential. Health research can also improve how life skills are taught and inform the design of equipment for non-verbal people to communicate.  It can also help reduce health system costs if research is conducted with the goal of helping people with disabilities reach their personal goals, create more equitable opportunities (employment, housing, etc.) for all persons with disabilities, and help people with disabilities live more independently.  Health research in Ontario enables better community integration for people with disabilities and creates a rich and fulfilling environment for everyone.

How can patients and families support, improve or empower health research?

It is not only important for the patient to participate in research, but to also have input into what is being researched and provide meaningful consult based on their individual lived experiences. Patients and families also benefit from having access to results from research.

When researchers, patients and families collaborate, from the initial research concept right through to the end result, it allows them to combine their experiences and knowledge to shape research in meaningful ways that help to improve the lives of people with disabilities. Collaboration is essential.

 

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Add your voice to the Patients + Research blog series. Email or call Elise Bradt at ebradt@caho-hospitals.com, 416-205-1469, or direct message or tweet at us on Twitter at @CAHOhospitals.

Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. To learn more about how health research makes Ontario healthier, wealthier and smarter, visit our impact page, and check out our other blog posts and videos.

 

RESEARCH SPOTLIGHT: Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital

In the last decade, advances in childhood disability research have led to new opportunities for children and youth with disabilities and their families. Likewise, many Ontario hospitals have recently adopted patient-centred care models to integrate the family voice in meaningful ways. The leadership of this practice at Holland Bloorview has led to an integrated family engagement program to merge the patient perspective across the hospital and the research institute, and inform best practices. A key element in the success of all research conducted in the Bloorview Research Institute is family engagement.

Continue reading “RESEARCH SPOTLIGHT: Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital”