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.

Alzheimer’s drug one step closer to reality after Krembil team signs major development deal

A research team at the Krembil Research Institute has inked a deal with a multinational pharmaceutical company that could speed development of a potential disease-modifying drug for Alzheimer’s disease.

French drug company Servier has announced a new strategic research partnership agreement with Toronto-based Treventis Corp. – a biotech company founded by Krembil Director Dr. Donald Weaver – to co-develop a promising new therapeutic treatment already underway at UHN.

“This is a very big deal,” said Dr. Weaver, a medicinal chemist, University of Toronto Professor, Canada Research Chair and neurologist who treats dementia patients at Toronto Western Hospital.

“Drug discovery is a tremendously competitive field and this partnership demonstrates the ability of Krembil and UHN to achieve a level of excellence on the world stage. It also helps cement our place as one of the leading neuroscience research facilities in Canada.”

As part of the collaborative agreement, researchers in Paris and Toronto will jointly develop compounds that target two key proteins known to play a role in Alzheimer’s disease. Those proteins, called tau and beta-amyloid, are believed to have a deleterious effect on brain function when they misfold.

“We all have these proteins in our brains. When they misfold they become toxic to brain cells. They kill brains cells,” said Dr. Weaver. “We have identified a class of compounds that we believe prevent beta-amyloid and tau from doing this.”

Dr. Weaver’s team has spent nearly two decades searching for a therapeutic strategy to slow or stop the neurodegenerative disease that affects more than 500,000 Canadians.  There are currently no disease-modifying drugs for Alzheimer’s on the market.

In 2013, Treventis was awarded $4.7-million in funding from the prestigious Wellcome Trust to investigate compounds, with the goal of designing a drug that can safely and effectively treat people with chronic neurological dementias, such as Alzheimer’s. Funding from the Wellcome Trust, a British-based independent charity, is extremely competitive, difficult to obtain and is traditionally awarded to researchers in the U.K.

“The Wellcome Trust funding allowed us to get to the point where we have a molecule that works, but needs some fine-tuning,” said Dr. Weaver. “Partnering with a major pharmaceutical company like Servier is the next logical step.”

Dr. Weaver is quick to also credit other funding agencies that have played a significant role in advancing the fundamental research to its current stage of applied drug discovery. Among the most generous contributors, he said, are the Alzheimer’s Society of Canada, Canadian Institutes of Health Research, Toronto General & Western Hospital Foundation, The W. Garfield Weston Foundation, BrightFocus® Foundation and Krembil Foundation.

For its part, Servier has indicated it is excited to partner with Treventis in taking this research to the next level.

“We very much hope that this new collaboration will allow us to answer the huge unmet patient need for disease-modifying treatment of Alzheimer’s disease, thanks to Treventis’ unique and innovative technology,” Christian de Bodinat, the company’s Director of the Center of Therapeutic Innovation in Neuropsychiatry, said in a statement.

“We are very excited to be part of one of the first programs employing a dual approach in this field.”

As part of the agreement, Servier will fund all research costs and maintain worldwide rights to develop and commercialize drugs advanced during the partnership.

Dr. Weaver and his team are thrilled to partner with one of the most innovative pharmaceutical companies in the world.

“I think it says that Servier has faith that we have a sound approach, excellent molecules and that there is a good foundation already in place,” said Dr. Weaver. “This allows us to optimize and fine-tune the molecule and perform more elaborate biological evaluations.”

Next steps for the research team include ramping up work in the laboratories at the Krembil Discovery Tower and JLabs, and attempting to identify a candidate for a Phase 1 clinical trial.

*Story originally published on UHN website here.

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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: Pamela Parker

Research and care at Canada’s first cardio-rheumatology clinic

Meet Pamela

Two years ago, Pamela Parker’s hands became cracked and sore, and she learned she had developed severe psoriasis and eczema.

Pamela Parker Women's College Hospital

After seeing a specialist, she learned the psoriasis was also in her joints, a condition known as psoriatic arthritis. She was referred to Dr. Lihi Eder, a rheumatologist and a scientist at Women’s College Hospital (WCH) who runs the psoriatic arthritis program at WCH. After sharing her family’s history of heart disease, Dr. Eder referred Pamela to the WCH cardio-rheumatology clinic, the first of its kind in Canada.

Research has shown that patients with rheumatic conditions, such as psoriatic arthritis and rheumatoid arthritis, are at a higher risk for heart disease and other cardiovascular complications. The new clinic is helping patients like Pamela manage their heart health, and ideally, prevent a serious cardiac event. Dr. Eder and Dr. Paula Harvey, the head of cardiology at WCH, jointly run the clinic and collaborate on research studies about the connections between joint health and heart health.

Pamela shared why she is grateful for her care and why she gives back by participating in research.

Could you tell us about your health story?

All of a sudden, it was May 2015, when my skin just went berserk and my joints just went berserk. I was getting married as well, and you are focused on your nails and hands. I thought — why would my hands go from normal to this, and my joints? That’s when I was referred to Dr. Eder. She is very thorough and very caring. She actually takes her time out of her day to call me personally, which does not usually happen with specialists. I found out I do have psoriatic arthritis on top of psoriasis and eczema. She said we need to treat this aggressively or I could end up being crippled.

How were you referred to the cardio-rheumatology clinic?

Dr. Eder said there was a correlation between psoriatic arthritis and heart disease. She asked if I had a family history. I do, my father passed away of a massive coronary and my sister has had a triple bypass. I was referred to the cardio-rheumatology clinic and they did tests, and I have elevated cholesterol, nothing major at this point. For me, it was so amazing to have access to a cardiologist at a stage where if there is an issue they will be on top of it, knowing my family history. Dr. Eder then asked if I wanted to join a combined study and I was happy to participate in their research.

Why did you decide to participate in research?

It is so important. Participating is minor compared to having a crippling disease that no one knows anything about. My kids, my grandkids, my great grandkids could end up with these conditions, and if studies could figure out the ins and outs and shortcuts to detect issues early, I am all for it!

 

Approximately 30% of the people with psoriasis will develop an inflammatory arthritis known as psoriatic arthritis. Learn more about the psoriatic arthritis rapid access clinic at Women’s College Hospital and discover patient resources.

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? Email or call Elise Johnson at ejohnson@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.