THINK. LEARN. DISCOVER.
Patient Engagement in Research
In Remembrance of Talent, Commitment, and Kindness The Jasmine Quigley Memorial Award
Exercise for Cancer Rehabilitation Dr. Langlier’s PatientCentered Approach
Bridging the Gap Improving Science Communication in Public Health
IMSSA POSTER Co-presidents, Kayvan Aflaki and Serena Peck, would like to thank our IMS student community for staying engaged during this hybrid academic year!
Summer Elections 2022 Thursday, June 16 from 6-7 pm Positions available (# of vacancies): President (1) or Co-Presidents (2) Vice-President, Operations (1) Vice-President, External (1) External Communications (1) Internal Communications (1) Secretary (1) Treasurer (1)
Kayvan Aflaki Co-President, MSc. Student Kayvan studies maternal mortality with the Ontario Coroner. His favourite snack is bananas with peanut butter and if he could have any superpower, it would be the ability to steal other people's superpowers.
Check our weekly IMSSA email blast for more details!
Visit our new website! www.imssa.ca
Serena Peck Co-President, MSc. Student Serena studies the cardiovascular health of women with breast cancer during and after treatment. Her favourite snack is chocolate covered pretzels and if she could have any superpower it would be to read minds.
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IN THIS ISSUE Letter from the Editors .................................. 4 Director’s Message ....................................... 5 Contributors................................................... 6 Infographic .................................................... 8 Features....................................................... 10 BMC Showcase ........................................... 18 Viewpoints .................................................. 20 Faculty Highlights........................................ 28 Faculty Spotlight ......................................... 30 Student Spotlight ........................................ 32 Alumni Spotlight ......................................... 34 Diversity in Science..................................... 36 Book Review................................................ 38 Travel Bite ................................................... 39 Raw Talk 103rd Episode ............................... 40
MAGAZINE STAFF EDITORS-IN-CHIEF: Jason Lo Hog Tian Mikaeel Valli EXECUTIVE DIRECTORS: Stacey J. Butler Dorsa Derakhshan Elizabeth Karvasarski PHOTOGRAPHERS: Dorsa Derakhshan (Director) SOCIAL MEDIA TEAM: Sandy Lee DESIGN EDITORS: Amy Zhang (Director) Sherry An Amy Assabgui Yuejun (Mimi) Guo Abeeshan Selvabaskaran Michie (Xingyu) Wu
JOURNALISTS & EDITORS: S. Hussain Ather Beatrice Ballarin Vritika Batura Laura Best Stacey J. Butler Sonja Elsaid Bahar Golbon Noor al Kaabi Paras Kapoor Elizabeth Karvasarski Zahra Khan Carmen Li Kate Maksyutynska Serena Peck Nayaab Punjani Madhumitha Rabindranath Iciar Iturmendi Sabater Vaidhehi Veena Sanmugananthan Shu’ayb Simmons Archita Srinath Lindsey Thurston Kyla Trkulja Beatrix Wang Sally Wu
FEATURE INFOGRAPHIC By Amy Zhang, MScBMC Candidate (2T2)
Copyright © 2022 by Institute of Medical Science, University of Toronto. All rights reserved. Reproduction without permission is prohibited. The IMS Magazine is a student-run initiative. Any opinions expressed by the author(s) are in no way afﬁliated with the Institute of Medical Science or the University of Toronto.
COVER ART By Abeeshan Selvabaskaran, MScBMC Candidate (2T2) FOLLOW US ON SOCIAL MEDIA! www.imsmagazine.com @IMSMagazine @IMSMagazine IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT |
LETTER FROM THE EDITORS
Letter from the
e hope you are all looking forward to a warm and rejuvenating spring season, especially after a long, snow-filled winter. Instead of highlighting a particular disease for the Spring 2022 issue, we have decided to examine patient engagement in research for the issue theme. This is a very timely topic as it has become increasingly more commonplace for patients and community members to play an important role in all research areas. Patient engagement is also important in our own work, and we hope this issue highlights its importance in research and some excellent examples of patient engagement at IMS. This issue, we featured IMS members Drs. Sean Rourke, Samantha Anthony, David Langelier, and Emily Ho who are all pioneering patient engagement initiatives in HIV, pediatric rehabilitation, cancer, and occupational therapy respectively. We put the spotlight on Dr. Ahmed Hassan who is exploring personalized medicine for treating mental health in the Muslim Community; and Dr. Karolina Bidzinski, an alum who goes over how she made the transition to management consulting. We also pay tribute to the life and work of Jasmine Quigley and the IMS award created to honour her memory. Our Viewpoint articles for this issue provide insights into MDMA as a potential treatment for PTSD, the need for pharmacare in Canada, the use of mindfulness to help with neurorehabilitation, and improving science communication in public health. We also have a Diversity in Science article that examines medical mistrust in Black and Indigenous communities, and we follow an international student’s journey towards their PhD in our Travel Bite. Lastly, we are happy to include our second collaboration with Raw Talk Podcast with an article based on their 103rd episode on Underrepresentation in STEM. We are extremely proud of this issue and of all the work of the IMS Magazine team. We hope you enjoy reading this issue and we look forward to producing our next issue in the summer!
Jason Lo Hog Tian
Jason is a 4th year PhD student examining the mechanisms linking HIV stigma and health under the supervision of Dr. Sean Rourke.
Mikaeel is a 5th year PhD student. He works with Dr. Antonio Strafella’s lab that uses neuroimaging techniques to understand the underlying mechanisms in Parkinson’s disease with nonmotor complications.
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DIRECTOR’S MESSAGE Photo Credit: Mikaeel Valli
ith the warm entrance of the Spring season also comes the publication of the Spring 2022 IMS Magazine. Spring is a time when the natural world revives and reinvigorates itself from the harsh cold winter—and this notion coincides nicely with the current theme on reviving the importance of engaging patients in research, especially since many patients felt isolated from the COVID-19 pandemic.
DR. LUCY OSBORNE Acting Director, Institute of Medical Science Professor, Departments of Medicine and Molecular Genetics
This issue showcases IMS faculty involved in patient engagement as part of their research. Read the work by Dr. Sean Rourke and his group that are devising ways to connect with at-risk HIV individuals to get free testing and timely treatment. Another feature describes Dr. Samantha Anthony and her team’s effort in developing novel ways to engage with children who recently underwent organ transplant to enhance their psychosocial adaptation and quality of life. In another feature, you will learn about the importance of exercise in cancer survivors and how Dr. David Langlier and his team are developing ways to promote that among cancer patients to enhance their quality of life. Dr. Emily Ho and her colleagues are exploring ways to optimize health outcomes in youths with brachial plexus injuries through patient engagement. The faculty spotlight showcased Dr. Ahmed Hassan’s effort in developing a holistic program with the goal to encourage the Muslim Community to seek treatment for mental health. The Annual Scientific Day is the academic highlight of the year for IMS. I am excited that it will be happening in person at the Hart House on Tuesday, May 17th, 2022. We are thrilled that the Bernard Langer Annual Lecture in Health Sciences Keynote Speaker will be one of our own faculty members, Dr. Gelareh Zadeh. She will provide a keynote address on the topic of “Clinically Relevant Molecular Data Driving Surgical Management for Brain Tumors.” On behalf of the entire IMS community, I extend my heartiest congratulations to the new faculty joining IMS and members that have been promoted within the ranks of IMS! We wish you all the best with your research endeavors. I would like to extend my gratitude to the IMS Magazine’s Editors-in-Chief, Mikaeel and Jason, and all the editors, journalists, social media, and design team for their, yet again, excellent production of another issue. I hope you will enjoy reading this issue as much as I did! Sincerely, Dr. Lucy Osborne Acting Director, Institute of Medical Science
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Shu’ayb Simmons is a first year MSc Candidate working with Dr. Tripathy at the CAMH Krembil Neuroinformatics Centre. Their research pertains to the neurobiological ramifications of racial disparity, aiming to elucidate the molecular basis of Black disparity in schizophrenia. Shu‘ayb enjoys active volunteering, social activism, fashion, and music production in their free time.
Serena Peck is a MSc student studying under the supervision of Dr. Paaladinesh Thavendiranathan. Her research looks at physical activity levels during cancer treatment and post-treatment cardiac function, cardiorespiratory fitness, and quality of life in women with breast cancer. Serena loves being in nature and tending to her plants!
Carmen Li is a second year MSc student under the co-supervision of Dr. Thomas Eiwegger and Dr. Theo Moraes at SickKids Hospital. Her work focuses on utilizing flow and mass cytometry to understand the immunological mechanisms of oral immunotherapy in food allergic children undergoing treatment. In her spare time, you can catch her baking or reading in a coffee shop.
Noor al Kaabi is an MSc student working with Dr. Dmitry Rozenberg at Toronto General Hospital. Her research is focused on respiratory health, physical activity and quality of life in people with Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders. Outside of research, she loves photography, digital art and is a certified personal trainer.
Laura Best is is a recent IMS alumni currently completing postdoctoral fellowships in addiction neuroimaging at the Centre for Addiction and Mental Health and child welfare with the FactorInwentash Faculty of Social Work at the University of Toronto. Laura is passionate about mental health and wellness, as a yoga instructor herself, and loves long walks with her pup!
Elizabeth Karvasarski is a MSc IMS student studying pulmonary hypertension at Mount Sinai Catheterization Laboratory under the supervision of Dr. Susanna Mak. Her research involves exploring whether the temporality of pulmonary vascular loading differ with exercise in pre-capillary vs. post-capillary pulmonary hypertension. Outside of research, Elizabeth practices martial arts and is a 4th degree black belt.
Iciar Iturmendi Sabater is a first year PhD student working with Dr. Meng-Chuan Lai at the Center for Addiction and Mental Health. Her research focuses on understanding how people with autism spectrum disorder cover-up or mask their social and communication differences, a process known as ‘camouflaging’. Iciar enjoys traveling, meeting new people and spending time with family and friends.
Vaidhehi (Veena) Sanmugananthan is a second year MSc student under the supervision of Dr. Karen Davis at the Krembil Brain Institute, Toronto Western Hospital. Her research focuses on examining pain and attention interactions in people that suffer chronic pain. Outside of the lab, Veena loves to run, play squash, sketch, and challenge herself to learn new art mediums!
Nayaab Punjani is a second year MSc student at IMS working with Dr. Michael G. Fehlings. Her research is examining a preclinical drug treatment that aims to provide a multifaceted approach targeting neural regeneration and inflammation following cervical spinal cord injury. She enjoys watching action and mystery genre movies and TV shows, as well loves sketching in her free time.
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Graphic design by Amy Assabgui
CONTRIBUTORS Bahar Golbon is first year MSc student investigating the diagnostic study and surgical management of primary hyperparathyroid patients under the supervision of Dr. Jesse Pasternak. In her free time, you can find Bahar struggling to complete her millionth puzzle, and drinking coffee!
Beatrice Ballarin is completing her PhD at the University of Toronto’s Institute of Medical Science and she is specializing in Cardiovascular Science. She is working under the cosupervision of Dr. Michael Tymianski and Dr. Michael Salter. Her research focuses on investigating the effect of a Nerinetide, a neuroprotectant drug, in promoting stroke recovery.
S. Hussain Ather is a first year PhD student working under John Griffiths at the Centre for Addiction and Mental Health (CAMH). He uses and develops computational modeling techniques to investigate the brain connectivity structures underlying neuropsychiatric disorders. He also likes cosplaying.
Kyla Trkulja is a first year MSc student at IMS studying under the supervision of Dr. Armand Keating, Dr. John Kuruvilla, and Dr. Rob Laister at Princess Margaret Hospital. Her work focuses on novel cancer therapies for lymphoma. Outside of academia, Kyla enjoys reading, writing, road trips, and going for walks in nature.
Stacey J Butler is a third year PhD student at IMS, specializing in respiratory medicine and epidemiology, under the supervision of Dr. Andrea Gershon. Outside of academia, Stacey enjoys creative activities, board games and cooking hearty vegetarian meals.
Madhumitha (Madhu) Rabindranath is a first year MSc student at IMS who is supervised by Dr. Mamatha Bhat. Her research focuses on leveraging AI to non-invasively diagnose liver graft fibrosis in post-transplant patients. Outside the lab, Madhu likes reading a good book and exploring the city.
Sonja Elsaid is a PhD student investigating brain function and cannabis use in individuals with social anxiety. Prior to going back to school, Sonja was a clinical research and medical communications professional with nearly 20 years of experience.
2T2 IMS Design Team The 2T2 IMS Design Team is a group of second year MSc students in the Biomedical Communications (BMC) program. Turning scientific research into compelling visualizations is their shared passion, and they are thrilled to contribute to the IMS Magazine.
Social Media Team Sandy Che-Eun Lee is a fifth year PhD student under the supervision of Dr. Marianne Koritzinsky at the Princess Margaret Cancer Research Center. Her research focuses on characterizing a novel oxygen sensitive enzyme in the hypoxic tumour microenvironment. Outside of the lab, Sandy enjoys running and exploring new activities like rock climbing! sandyserena___
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Compiled by Stacey J. Butler
Designed by Amy Zhang
IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT |
Ending Canada’s HIV Epidemic One Diagnosis at a Time By Kyla Trkulja
t is estimated that about 70,000 Canadians are living with Human Immunodeficiency Virus (HIV).1 Thankfully, advances in treatment, increased awareness about preventative measures, and efforts to combat stigma have both improved the prognosis of people with the virus and slowed its transmission across Canada. The goal of bringing an end to this virus as a widespread threat is possible by the year 2030—although we can get there sooner if we increase access to HIV testing and connect people to care.2
A major barrier to this is reaching the 13% of those living with HIV who do not know that they are infected.3 While this may seem like a minority of the population, lack of diagnosis is a key driver of the HIV epidemic. Since these individuals are not receiving treatment, they can still transmit the virus through unprotected sex and sharing of drug injection equipment. Increasing access to diagnostic testing is a major strategy in Canada’s plan to end HIV. Once diagnosed, individuals can get access to life-saving antiretroviral therapy, which allows patients to live long, healthy lives.3 What’s even more incredible is that individuals on antiviral medications who achieve viral suppression, when HIV can no longer be detected in their blood, are no longer infectious. This 10 | IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT
means they cannot transmit the virus to others, making this a huge public health advancement in ending the spread of HIV. Dr. Sean Rourke, a clinical neuropsychologist and scientist with the MAP Centre of Urban Health Solutions at St. Michael’s Hospital and Unity Health Toronto, has played an important role in Canada’s efforts to increase access to HIV testing and ensuring those with the virus can live normal lives. After completing his PhD in clinical neuropsychology at the University of California San Diego, he was given the opportunity to open an HIV neurobehavioural clinic in Toronto at St. Michael’s Hospital—the first neuropsychology clinic in Canada for HIV-related cognitive concerns. “[The brain] is just like any other organ in the body; it’s affected by HIV mainly because of inflammatory processes,” Dr. Rourke explains. As such, his clinic aims to better understand why some patients with HIV develop a mild brain injury while others don’t, whether this injury is due to HIV or other conditions, how this injury affects wellbeing and everyday functioning, and how to treat it. This clinic has tested thousands of people and both improved the quality of life of individuals with HIV and increased knowledge on how HIV affects the brain.
Dr. Rourke also strives to increase accessibility to HIV testing by filling in gaps in the health system across the country. He analyzes the needs of communities throughout Canada and determines how they can best be addressed. Dr. Rourke’s goal is to reach individuals who are undiagnosed so they can “know their status” and make decisions about going for treatment. He achieves this by increasing HIV awareness, addressing the barriers that can cause stigma, and connecting individuals to free testing and treatment. “I’m trying to bridge the health, public health, and community sectors together,” Dr. Rourke says. “We can end HIV in Canada—we have everything we need. It’s just that we’re not doing the things that we need to do to get there.” Dr. Rourke led efforts in getting Canada’s first self-test for HIV approved, and launched the “I’m Ready to Know” research program (www.readytoknow.ca) featuring Canada’s Chief Public Health Officer, Dr. Theresa Tam, on June 2nd, 2021. Individuals across Canada can now download the ‘I’m Ready, Test’ app that gives them the ability to order free HIV self-test kits and get connected to care anywhere in Canada. They can also book an appointment with a peer navigator Graphic design by Amy Assabgui
naloxone through dispensing machines in the community. The goal of these machines is to provide low-barrier access to a collection of products that are urgently needed while encouraging people to take care of themselves, and reduce harm without the risk of shame or stigma. The ‘Our Healthbox’ machines will be all over the country starting in the Summer of 2022, including remote and First Nations communities, so people can get, as Dr. Rourke describes, “what they need for their health in ways that works for them where they live.”
DR. SEAN B. ROURKE PhD, FCAHS, Professor in the Department of Psychiatry at the University of Toronto Photo Credit: Dr. Rourke
online to support them with the testing and linkages to care. In the first nine months since launching, over 5,000 HIV self-test kits have been accessed across the country. In order to reach populations that may not have smartphones or a permanent home address, Dr. Rourke is also launching a new program called ‘Our Healthbox’, which allows individuals to access free HIV self-tests and harm-reduction supplies including clean needles and
While the dispensing machines will improve access to HIV self-tests and minimize the discomfort of asking for a test from a doctor, Dr. Rourke is also working to combat the stigma that serves as a barrier to HIV testing and access to health services. He is involved in a program called “The Positive Effect” (www. positiveeffect.org), a fact-based, lived experience movement powered by people living with HIV and the communities that support them. Their work is focusing on ending HIV stigma once and for all by teaching people about the misconceptions and misinformation about HIV to reduce fear. “Most of the time, people who stigmatize simply do not have the right information—they need to know more about HIV and have the right language to
engage respectfully in the conversation” Dr. Rourke explains. “If everybody did that a little bit more, the world would be a lot better.” He remains optimistic that with the right tools, individuals and society can learn to broaden their mindsets. This, combined with increased access to testing and treatment, is having a direct impact on ending the HIV epidemic in this lifetime. References 1. Public Health Agency of Canada. Estimates of HIV Incidence, Prevalence and Canada’s Progress on Meeting The 90-90-90 HIV Targets. 2020 Dec. https://www.canada.ca/content/dam/hc-sc/ documents/services/publications/diseases-conditions/summary-estimates-hiv-incidence-prevalence-canadas-progress-90-90-90/ national-hiv-estimates-report-2018-en.pdf 2. Lima VD, Brumme ZL, Brumme C, et al. The Impact of Treatment as Prevention on the HIV Epidemic in British Columbia, Canada. Curr HIV/AIDS Rep. 2020 Apr;17(2):77-87. doi: 10.1007/s11904020-00482-6. 3. Malekinejad M, Blodgett J, Horvath H, et al. Change in Condom Use in Populations Newly Aware of HIV Diagnosis in the United States and Canada: A Systematic Review and Meta-Analysis. AIDS Behav. 2021 Jun;25(6):1839-1855. doi: 10.1007/s10461-020-03113-8.
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Dr. Samantha Anthony, first Social Worker Health Clinician-Scientist in Canada: “To really understand children’s needs, we must listen to them”
By Iciar Iturmendi-Sabater
he quality of healthcare in Canada is better than ever, and Canadians have never been healthier.1 Over the last decade, the number of organ donors in Canada has increased by 59%, further enhancing health and saving lives.2 Among the factors contributing to these improvements is the increasing emphasis on patient engagement: the collaboration between patients, family members, and informal caregivers with healthcare professionals to improve healthcare quality. Through patient engagement, Dr. Samantha Anthony leads a clinical research program focused on promoting psychosocial adaptation and quality of life in children who have undergone solid organ transplantation. She is a Social Worker within the Transplant and Regenerative Medicine Centre and a Health ClinicianScientist at The Hospital for Sick Children (SickKids). Additionally, Dr. Anthony is an Associate Professor (status only) at the Factor-Inwentash Faculty of Social Work and is cross-appointed as an Associate Member with the Institute of Medical Science (IMS) at the University of Toronto (UofT). As a Health Clinician-Scientist in Social Work, Dr. Anthony is the first professional to hold this unique role in Canada. This 12 | IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT
position was created as a result of an innovative partnership between SickKids and the Faculty of Social Work at UofT. “I am always advocating for these positions because the clinical scientist role facilitates the bi-directional transfer of knowledge between clinical practice and research, which is a critical gap to bridge,” Dr. Anthony shares. Patient engagement is a way to bridge that gap.
interventions is not predicted solely by objective medical measures, but also by patient-reported outcome measures (PROMs). PROMs capture the experiences of patients from a unique, subjective stance, which objective medical measures cannot assess on their own.2
When asked how patient perspectives have been integrated into her research, Dr. Anthony explains that when she started her career as a Social Worker over 20 years ago, survival statistics were viewed as the primary endpoints for considering the efficacy of solid organ transplants. However, a paradigm shift began where quality of life emerged as an essential outcome that deserved integral consideration within transplantation.
Dr. Anthony expresses that “traditionally, children’s lives were often understood from the perspectives of parents. But over time, there has been increasing awareness that we must provide children the opportunity to speak for themselves. [In order] to really understand children’s needs, we must listen to their views about health and well-being.” To achieve this, Dr. Anthony’s team is currently working on developing an electronic PROM platform called Voxe that will help to collect information about the experiences of pediatric transplant recipients.3
“As a clinician, I realized we needed to explore the lived experiences of transplant recipients, assess their post-transplant adaptation, and identify risk factors that affect their psychosocial wellbeing,” Dr. Anthony explains. In fact, it was her role as a Social Worker within the SickKids Transplant and Regenerative Medicine Centre that motivated Dr. Anthony to pursue a PhD within the IMS. Today, we know that the effectiveness of medical
Dr. Anthony notes that many young patients want the opportunity to engage with others in the transplant community. “One of the things within solid organ transplantation is that it encompasses a very small patient population compared to other chronic disease populations. Many of the children have not met someone else who has had a transplant.” To address this, Dr. Anthony and her team are testing the effectiveness of a novel peer-to-peer Graphic design by Michie (Xingyu) Wu
Children express what life is like after their transplant through art. transplant recipients across Canada. The three days were remarkable because we could see the mentors bonding and finding it very therapeutic to connect over shared experiences.” She adds that especially now, when transplant recipients feel the isolation of the COVID-19 pandemic on top of the unique experience of being a transplant patient, it is timely to offer the opportunity to connect patients and their families with others.
DR. SAMANTHA ANTHONY PhD, MSW, RSW Social Worker within the Transplant and Regenerative Medicine Centre and a Health Clinician-Scientist at SickKids | Associate Professor in the FactorInwentash Faculty of Social Work at the University of Toronto | Assistant Professor Institute of Medical Science Photo Credit: SickKids
mentorship program: the iPeer2Peer Support Mentorship Program in Pediatric Solid Organ Transplantation.4 Dr. Anthony shares, “We conducted mentorship training over three days with young adult
Within the field of patient engagement, Dr. Anthony’s clinical and research work also aims to acknowledge the power imbalance, racism, and lack of control that has shaped the skepticism and mistrust towards research and healthcare systems that many marginalized communities experience. Dr. Anthony’s team is exploring the organ donation and transplant experiences of Chinese Canadians (supported by the the Kidney Foundation of Canada) and Indigenous patients, families and communities in Canada (supported by a Canadian Institutes of Health Research Project Grant and the Leong Centre for Healthy Children Catalyst Grant). Dr. Anthony recognizes “it is critical that we co-create culturally appropriate research designs and methods while knowing that sustainable engagement takes time and effort. It is our responsibility to question preconceived notions of research and take
part in both self-reflection and fostering new dialogue.” By supporting the role of ethnoculturallyminded Clinician-Scientists like Dr. Anthony, patient engagement practices can promote more meaningful interventions, outcomes, and an inclusive healthcare system. Dr. Anthony expresses excitement that “in recent years, we have seen disciplines beyond medicine establish these clinician-scientist roles, which is wonderful. [These disciplines include] nursing, rehabilitation sciences, psychology, and social work.” She encourages young clinicians and scientists to be creative when thinking about how to bridge the gap between research and clinical care through efforts to foster patient engagement. References 1. Dhalla IA, Tepper J. Improving the quality of health care in Canada. C Can Med Assoc J. 2018 Oct;190(39):E1162. 2. Canadian Institute for Health Information, 2020. Annual Statistics on Organ Replacement in Canada: Dialysis, Transplantation and Donation, 2010 to 2019. [online] Ottawa: CIHI. 3. Anthony SJ, Stinson H, Lazor T, et al. Patient-reported outcome measures within pediatric solid organ transplantation: A systematic review. Pediatr Transplant. 2019 Sep;23(6):e13518. 4. Anthony SJ, Pol SJ, Lin J, et al. Creation of an electronic patient-reported outcome measure platform Voxe: a mixed methods study protocol in paediatric solid organ transplantation. BMJ Open. 2021 Oct;11(10):e053119. 5. Anthony SJ, Young K, Ghent E, et al. Exploring the potential for online peer support mentorship: Perspectives of pediatric solid organ transplant patients. Pediatr Transplant. 2021 Aug;25(5).
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Moving into patient-centered cancer rehabilitation
By Bahar Golbon
urrently, one in two Canadians are projected to be diagnosed with cancer in their lifetime.1 Although cancer treatments such as chemotherapy, radiation, and surgery can be curative, they often leave individuals with post-therapy impairments, reducing their quality of life.2 Improvements in cancer treatment have dramatically reduced mortality rates since the 1990s.1 This has created a large population of cancer survivors who must cope with their impairments for a much longer period of time. Unfortunately, cancer rehabilitation literature is underwhelming, and physiatrists are lacking high quality evidence-based approaches to sufficiently support these patients. Dr. David Langelier’s role as a clinicianinvestigator lies at the center of this growing issue. Dr. Langelier is an assistant professor at the University of Toronto’s Institute of Medical Science (IMS), and a physiatrist at the Cancer Rehabilitation and Survivorship Clinic at the Princess Margaret Cancer Centre (PMCC). He also works at the Toronto Rehabilitation Institute. Dr. Langelier notes, “These survivors now have the unfortunate opportunity to potentially live with these impairments, but we’re not yet equipped to sufficiently address these impairments as we lack the necessary infrastructure.” Hence, physiatrists are relying on treatment regimens from other injured populations 14 | IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT
(i.e., spinal cord injury or brain injury) to fit the needs of oncology patients. As a physiatrist, Dr. Langelier relies on exercise to treat his patients. Exercise is an effective method to improve symptoms, minimize disease progression and recurrence, and potentially even reduce mortality.3 Another benefit of prescribing exercise as a treatment option is that the patient regains a sense of control over their life and body. Instead of being dictated by their cancer diagnosis, treatment, and post-treatment ailments, patients can re-assert dominance over their disease through the choice to exercise. “If we can say, ‘you can exercise and you have control over potentially changing your course of treatment.’ That’s huge.” Much of the rehabilitation provided in the oncology realm is targeted towards cancer survivors. Dr. Langelier is also passionate about providing rehabilitation to patients with incurable or metastatic disease. Although they may never be cured of their malignancy, Dr. Langelier highlights the importance of providing a chance for these patients to improve their symptoms such as fatigue, anxiety, pain, and potentially to even delay disease progression. Unfortunately, conventional exercise and rehab programs do not cater to the needs of patients with incurable cancer. Dr. Langelier elaborates, “The terminology
found in educational materials presented to advanced cancer patients did not relate to them as [the materials] focus on survivors and long-term changes. Patients did not feel these terms and ideas appropriately applied to them. So, we needed to change the content.” These challenges were the ultimate inspiration for the initiation of the Cancer Rehabilitation Exercise for Advanced Cancer (CaRE-AC) program at PMCC, which is based on the original CaRE@Home program.4 It is an eight-week, multidimensional rehabilitation program for patients with advanced cancer. This program underwent feasibility testing as a pilot study prior to the COVID-19 pandemic. With the pandemic creating a roadblock to in-person interactions, the study was partially adapted to a virtual setting. Patients attended physical assessments at the hospital and independently performed exercises at home. In this population, it is unlikely to see large improvements, instead the goal is to minimize natural decline in their health status. The new virtual aspects proved to be immensely effective, with trends supporting stabilization and even improvement in functional ability. Ultimately, the program was deemed to be feasible and highly acceptable among patients. Dr. Langelier and his team are now working towards launching a multicenter study to further test the feasibility of CaRE-AC. Dr. Langelier explains that a constant challenge he faces with this group is the heterogeneity, as Graphic design by Mimi Guo
Dr. David Langelier Assistant Professor, Institute of Medical Science, University of Toronto | Physiatrist, Cancer Rehab and Survivorship Clinic at the Princess Margaret Cancer Centre. Photo Credit: UHN Digital
If we can say, ‘you can exercise and you have control over potentially changing your course of treatment.’ That’s huge.
each patient is unique in their journey and the treatments they endure. Thus, the continuation of this project is vital to understand the true scope of CaRE-AC among this vastly unique demographic. Dr. Langelier expresses “I’m extremely happy with the results that we’re seeing! The interviews with patients have been so informative and uplifting, as many patients were feeling they were forgotten about when it came to rehab. We are recognizing that some of these patients have months or years of life left and we could potentially really improve their function and quality of life during this time.”
capture this data accurately, Dr. Langelier suggests developing a provincial or federal cancer rehabilitation database as a longterm goal. Physical therapists, occupational therapists, speech therapists and other rehabilitation experts must be employed to develop appropriate impairment algorithms and codes. With the minimal number of physiatrists in Canada and the growing number of Canadians who will require post-cancer rehabilitation, the need for one such database is dire. Furthermore, the next generation of medical professionals must be trained to expand their reach to the growing population of suffering patients.
Dr. Langelier explains that the patients lead their rehabilitation journey and initiate the research process. “The questions we need to ask are: what is the patient’s priority and what are they suffering with the most that we need to overcome?” Additionally, once a study is complete, it is necessary to share the results with the patients to inform them of their contributions and any progress made. If we saw improvements, it could even encourage patients to continue with their exercises.
With dedicated researchers like Dr. Langelier tackling the ever-growing epidemic of cancer-related impairments, we can be optimistic about the future of cancer care. As a new addition to the rehab team at PMCC, we eagerly anticipate a multitude of innovative projects in the future from Dr. Langelier and his mentors and collaborators, Drs. Eugene Chang and Jennifer Jones.
Cancer rehabilitation is definitely moving in the right direction but there is always more work to be done. Dr. Langelier highlighted a gap in the current data, “I think that we haven’t appropriately established the incidence and prevalence of impairments effecting cancer patients.” To
References 1. Canadian Cancer Statistics Advisory Committee in collaboration with the Canadian Cancer Society. Canadian Cancer Statistics 2021. Canadian Cancer Society, Statistics Canada and the Public Health Agency of Canada 2021; 1–95. 2. Alfano CM, Rowland JH. Recovery issues in cancer survivorship: a new challenge for supportive care. Cancer Journal 2006; 12: 432–43. 3. Silver JK, Baima J, Mayer RS. Impairment-driven cancer rehabilitation: an essential component of quality care and survivorship. A Cancer Journal for Clinicians 2013; 63: 295–317. 4. Macdonald AM, Chafranskaia A, Lopez CJ, et al. CaRE @ home: Pilot study of an online multidimensional cancer rehabilitation and exercise program for cancer survivors. Journal of Clinical Medicine 2020; 9: 1–25.
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Dr. Emily Ho’s mixed methods approach to youth patient engagement in the clinic and research By Nayaab Punjani
ccupational therapy aims to help patients improve limb function and adapt to sensorimotor injuries so they may engage in activities that are most meaningful to them, thereby ameliorating the quality of life and autonomy of children experiencing brachial plexus injuries. The brachial plexus involves a series of nerves that bridges motor and sensory signals between the cervical spinal cord and upper limbs. Damage to the brachial plexus may occur through injuries during birth, trauma, or autoimmune neurodegeneration.1 Severity of damage to the brachial plexus can determine the degree of loss of active range of motion and recovery. These physical impairments alongside the patient’s needs and goals, determine the impact to which the condition affects their life. Thus, it is important to consider the patient’s perspective to conduct meaningful and relevant research in this field. The Canadian Institutes of Health Research (CIHR) defines patient engagement as going beyond the common role of a research participant; becoming partners to help design the research protocol and framing findings for policies.2 Dr. Emily Ho is an occupational therapist and research director in the Division of Plastic and Reconstructive Surgery at the Hospital for Sick Children and an assistant professor in the Department of Occupational Science and Occupational Therapy. Her work highlights the importance of patient engagement among youth with brachial plexus injuries.
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Starting off as an occupational therapist on a multidisciplinary brachial plexus team, Dr. Ho’s role was to find a way to assess upper extremity functional capacity to help determine the potential for reconstructive surgery. However, no systematic tool existed for this purpose. Alongside a multi-disciplinary team consisting of a physiotherapist, plastic surgeon, and other colleagues, Dr. Ho developed a quantitative measure early in her career. The clinical need for reliable and valid outcome measures motivated Dr. Ho to pursue a career in research. Dr. Ho went on to obtain a Master of Education degree and subsequently a PhD at the University of Toronto. In her PhD thesis, Dr. Ho combined quantitative and qualitative research, an approach more commonly known as mixed methods research, while examining shared decision making among patients and healthcare providers. Dr. Ho explains, “the qualitative piece was where the huge learning happened, and that’s what transforms who I am now. I think whatever journey any student takes, make sure to find a research topic and area that challenges you and a supervisor in a program that stretches you.” Dr. Ho began to examine shared decision making through interviewing families. “Prior to that I was looking at clinical outcomes, focused on measuring what the children can do. Then all of a sudden, through engaging in in-depth interviewing, I stopped and listened. I heard their voices and began to understand
a bit more about their journey, and that transformed what I now think of in terms of priority setting for research.” Her unique position as a clinician investigator permits Dr. Ho to incorporate patient engagement in her research and clinical practice. Dr. Ho stresses the importance of having families involved at each step of the research process. In her work, families are involved in developing interview guides and surveys, and providing feedback on new tools. Families are also approached to provide input on whether research outcomes resonate with their lived experiences, which allows for more meaningful research. Through her engagement with youth who have brachial plexus injuries, Dr. Ho highlights the importance of giving youth a chance to be involved in the research process. This can take place through leadership roles, being invited to speak on youth panels, and being a part of her advisory group. Being able to give back to others through their experience and peer-to-peer interventions also benefits the youth in their own health journey. Dr. Ho works with youth from newborns to teenagers and recognizes that their needs change as they transition into adulthood. Her current work aims to expand transitional care into adulthood with an emphasis on community care and mental health support, both of which are important to patients. Dr. Ho emphasizes, “if we stay as clinicians and we stay as Graphic design by Sherry An
what is meaningful.” Through patient interactions Dr. Ho determined the need for prioritizing transitional care research to enhance quality of life and access to care beyond childhood. When considering the future of patient engagement in research, Dr. Ho feels it is not sufficient to only give a voice to patients. There needs to be a standardized process in place for having patients involved in the co-development and co-creation of every step of research, and this effort will take time. Having a research body like CIHR involved in funding patient-oriented research is a big step forward. However, having access to patients without clinical connections may not be easy and alternative strategies are needed to connect patients with researchers.
DR. EMILY HO BSc, MEd, PhD, OT Reg. (Ont.) Research Director, Division of Plastic and Reconstructive Surgery, Hospital for Sick Children | Assistant Professor, Department of Occupational Science & Occupational Therapy | Cross appointments: Rehabilitation Sciences Institute; Institute of Medical Science Photo Credit: Creative Services Studio, The Hospital for Sick Children
researchers within our own little realm (e.g., childhood concerns), and we do not branch out and ask patients, their families, the community what is important, then we are not measuring what is meaningful and we are not producing
She offers advice to students aiming to incorporate patient engagement in the research process. She mentions, spending time with patient partners and stakeholders in the field you are interested in will allow you to learn more and network. Having the chance to ask simple open-ended questions like “what do you think about this project,” leaves room for the responder to provide input on any aspect of the research process. This approach provides insight on what they prioritize and often offers a unique lens.
Second, we need to give patients a chance to have their voice heard and discuss what is important to them. Lastly, it is important to use the correct channels (i.e., social media) to disseminate our findings and reach the target audience. To conclude, Dr. Ho has some general advice to succeed as a graduate student, “build a strong team to give you mentorship, and then look at the heart of what drives you and follow your passion. For me, my passion is to positively affect the lives of those I work with and that drives me to improve and move forward the scientific knowledge behind my work.” References 1. Brachial Plexus Injury [Internet]. [cited 2022 Mar 9]. Available from: https://www.hopkinsmedicine.org/health/conditions-and-diseases/brachial-plexus-injuries 2. Government of Canada CI of HR. Patient engagement - CIHR [Internet]. 2012 [cited 2022 Mar 9]. Available from: https://cihr-irsc. gc.ca/e/45851.html
Dr. Ho summarizes the steps we need to take to ensure our research is patientoriented. First, we must make research more relevant and meaningful to patients. IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT | 17
Master of Science in
Human Heart: Left Ventricle Cutaway
Viola Yu Viola Yu studied at Cornell University, majoring in Environmental Sciences, but maintained her other passion with a minor in Botanical Illustration. Upon graduation, she worked at Princeton University as a Teacher’s Assistant/Lab Manager for the laboratory portion of undergraduate biology classes. There she discovered her love for teaching and creating educational visual assets. Learning about biomedical communication as a career choice motivated her to prepare for applying to the accredited master’s programs. So she went back to school, but this time at Lehigh University in Graphic Design, with a minor in Fine Arts. She is currently enrolled in University of Toronto’s Biomedical Communications master’s program and is due to graduate in 2023. Chasing the Key to Longevity
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Whale Box is an interactive experience that invites users to explore physical and social characteristics of the narwhal, designed and developed by second-year students Amy Assabgui, Viktoriya Khymych, Shay Saharan, Abeeshan Selvabaskaran, Jenn Shao, Aimy Wang, and Amy Zhang.
The Marks We Make The Marks We Make is a delightful interactive scrollytelling experience about the history of cave art, designed by second-year MScBMC students Amy Assabgui, Aimy Wang, and Shay Saharan. This project evolved from the desire to explain the history of communication over the ages, into a passion project about the earliest marks we have a record of.
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Why MDMA-Assisted Therapy May Be the Future of PTSD Treatments
By Kyla Trkulia
ost-traumatic stress disorder (PTSD) has been estimated to affect 6-10% of individuals.1 However, experts predict that the prevalence of this disorder will rise sharply as a result of the COVID-19 pandemic.2 Throughout the pandemic, experiencing and witnessing serious illness, suffering, death, social isolation, unemployment, and burnout, combined with the rise of racist hate crimes, has contributed disproportionate amounts of stress to individuals around the world. As a result, the associated trauma undergone by many becomes an obstacle that will be difficult to overcome. Despite the several treatment options available for individuals with PTSD, their efficacy is substandard. Psychotherapy, which is a first-line treatment, is effective in only 44% of individuals after 40 months; this statistic is specific to those that are willing to dive deeply into their traumatic experience.1 This form of treatment is also hindered by its high drop-out rates. Additional treatments for PTSD include medications such as selective serotonin reuptake inhibitors (SSRIs), which are effective in only 20-30% of users.1 Benzodiazepines, which are another form of drug therapy, are even less effective and carry the risk of addiction. These existing therapies are designed to treat symptoms but do not address the underlying cause of the 20 | IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT
MDMA is able to put PTSD patients into the proper mindset for therapy by increasing openness and reducing fear. disorder. Therefore, individuals with PTSD are left to live with unresolved trauma, putting them at a higher risk of relapse. It is clear that new treatment options are needed, especially with the prevalence of this disorder expected to rise and a limited number of therapists to match. These gaps in existing treatments motivate researchers to explore novel approaches to address PTSD, with some scientists favouring a controversial option – MDMA, also known as “molly” or “ecstasy”.
Photo Credit: Verywell/Alex Dos Diaz 6
MDMA was first synthesized by Merck pharmaceuticals in 1912 and has been used alongside psychotherapy since the 1970s, before street use resulted in its prohibition in 1985.3 It causes the release of serotonin in the brain, leading to a positive mood. MDMA also upregulates dopamine, adrenaline, and oxytocin to increase pleasure, energy, and feelings of closeness to others, respectively.4 This combination of biological effects induces euphoria, extroversion, and empathy in the user, as well as a reduced sense of fear.4 While this can be harmful when used Graphic design by Michie (Xingyu) Wu
recreationally, research is finding that these effects can be effective to combat PTSD when combined with therapy. Although it is not a new concept, MDMAassisted therapy has recently been found to have several benefits over traditional treatment options for PTSD. The drug places the patient into an “optimal arousal zone” for psychotherapy such that they are able to address their traumatic memories due to being alert and motivated, but also relaxed and empathetic.4 By simultaneously reducing the fear response and increasing trust, the patient is able to gain clarity and acceptance of the past, see their problems in a new light, and focus on how to recover. This is in contrast to psychotherapy alone, where the patient is often frightened, closed-off, hesitant, and too distressed to make progress during their sessions. This further supports MDMA-assisted therapy as not only more effective than traditional therapy, but also more efficient, with many patients only needing 2-3 sessions instead of 20-40.5 While medications such as SSRIs merely mask the symptoms of PTSD, MDMAassisted therapy facilitates more direct coping strategies, leading to sustained positive effects.5 In addition, MDMA is less addictive, more tolerable, has less side effects, and needs to be used for shorter periods in comparison to existing drug therapies.5
Together, these features make MDMA a more attractive option for patients. The promise of this treatment has been observed in several early-phase clinical trials, with 72% of patients positively responding to MDMA-assisted therapy, and responses lasting longer with a lower risk of relapse.5 In one study, more than half of the participants who underwent MDMA-assisted therapy improved such that they no longer met the diagnostic criteria for PTSD, compared to only 23% of those who underwent therapy alone.3 The results from these trials were so positive that the first ever large-scale Phase 3 clinical trial is currently underway at 16 research sites across the United States, Canada, and Israel, with more sites expected to open across Europe.5 MDMA-assisted therapy is providing hope for the future of treating PTSD in a way that is safe and effective by assisting patients in targeting the cause of their trauma. The fact that only 2-3 sessions are needed makes this treatment option more affordable compared to weeks of therapy or months of medications. This will also place less burden on therapists as the incidence of PTSD rises in the coming years. Despite the benefits, it will be a challenge to decriminalize MDMA, and great efforts will need to be made to minimize its recreational use. With some
planning and creativity to safely reform prohibition policies, PTSD patients will finally have a chance at recovering and living normal lives. References 1. Thal SB, Lommen MJJ. Current Perspective on MDMA-Assisted Psychotherapy for Posttraumatic Stress Disorder. J Contemp Psychother. 2018;48(2):99-108. doi: 10.1007/s10879-017-9379-2. Epub 2018 Jan 6. Erratum in: J Contemp Psychother. 2018;48(2):109. 2. Bridgland VME, Moeck EK, Green DM, Swain TL, Nayda DM, Matson LA, Hutchison NP, Takarangi MKT. Why the COVID-19 pandemic is a traumatic stressor. PLoS One. 2021 Jan 11;16(1):e0240146. doi: 10.1371/journal.pone.0240146. 3. Mithoefer MC, Feduccia AA, Jerome L, Mithoefer A, Wagner M, Walsh Z, Hamilton S, Yazar-Klosinski B, Emerson A, Doblin R. MDMA-assisted psychotherapy for treatment of PTSD: study design and rationale for phase 3 trials based on pooled analysis of six phase 2 randomized controlled trials. Psychopharmacology (Berl). 2019 Sep;236(9):2735-2745. doi: 10.1007/s00213-019-05249-5. 4. Sessa B. MDMA and PTSD treatment: “PTSD: From novel pathophysiology to innovative therapeutics”. Neurosci Lett. 2017 May 10;649:176-180. doi: 10.1016/j.neulet.2016.07.004. 5. Bahji A, Forsyth A, Groll D, Hawken ER. Efficacy of 3,4-methylenedioxymethamphetamine (MDMA)-assisted psychotherapy for posttraumatic stress disorder: A systematic review and meta-analysis. Prog Neuropsychopharmacol Biol Psychiatry. 2020 Jan 10;96:109735. doi: 10.1016/j.pnpbp.2019.109735. 6. Bugos, C. (2022, January 7). 8 health and medicine milestones from 2021. Verywell Health. Retrieved April 27, 2022, from https://www. verywellhealth.com/health-medicine-milestones-2021-5215089.
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What do we want? Pharmacare! When do we want it? Now! By Stacey J. Butler
anada is often referred to as a country with ‘free healthcare’. The word ‘free’, however, is misleading. Canada is the only developed country with universal healthcare without prescription drug coverage, also known as ‘Pharmacare’.¹ Worse yet, Canadians pay more money for prescription medications than other high-income countries.² In a study of ten countries, Canada had the highest drug cost per capita ($824 CAD), while countries such as New Zealand ($365 CAD) had much lower costs.² Medications are vital to healthcare and the high cost in Canada is a socioeconomic barrier. Let’s calculate the cost of one of my medications: One month = $658 One year: $658 x 12 months = $7,896 As a U of T graduate student, I am fortunate to have some medication coverage through student insurance, but 22 | IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT
this plan only covers 80% of the cost and has a $5,000 yearly maximum. Purchasing one of my medications drains my coverage before the school year is even over. I am left to pay thousands of dollars out-ofpocket unless I can somehow obtain additional coverage. I am not alone in this struggle–research suggests one in five Canadians struggle to afford their medications.¹ On January 1st, 2018, it seemed like Ontario was taking the right step towards Pharmacare when they implemented OHIP+. The OHIP+ program covers the cost of prescription medications for all Canadians 24 and under without private coverage,³ however, it is still far from a universal program. Although OHIP+ boasts coverage for more than 5,000 drugs,³ many expensive medications and treatments for rarer diseases are not included or have approval restrictions.⁴ Furthermore, children are not eligible for OHIP+ if their parents have coverage through an employer. Families with private coverage and high prescription costs are
left in the same position I am–scrambling to pay for their health out-of-pocket. These high costs can prevent Canadians’ ability to use the treatment at all, even if it has the potential to improve their quality of life. The Ontario Trillium Drug Benefit is similar to OHIP+,⁵ a program where the government covers drug costs for people without insurance, or with insufficient coverage. Although this sounds like a great solution in theory, the program requires individuals to pay a deductible based on their income. Similarly to OHIP+, it does not cover all medications. Many medications for chronic diseases are omitted and requests for exceptional access are regularly denied. My own medications are among the many denied, regardless of solid evidence proving their efficacy. Being unable to afford medications leaves patients in a difficult situation, especially those without the financial means to pay out-of-pocket. Patients are left asking the question, “How much money is my health really worth?”. It is a question that no one should ask themselves. Graphic design by Mimi Guo
When patients are unable to afford medications, they either decline treatment entirely or may take the medication less often, which is referred to as ‘nonadherence’. A Canadian survey revealed 8% of Canadians receiving a prescription did not adhere to it due to cost.⁶ Nonadherence to medications for cost-related reasons a dual-edged sword. It saves the individual money in the short term but can end up costing the government and potentially the individual more money in the long term. Medication is less effective when not taken as prescribed, usually resulting in the condition being uncontrolled or worsening in severity. This domino effect can ultimately cost the government a significant sum if it increases healthcare use and hospitalizations. The individual can also end up losing more money if they need to miss work due to illness, not to mention that their overall health and quality of life will also suffer. Although it is difficult to estimate the exact cost of non-adherence, there is clearly a significant economic impact.⁷
Researchers are compiling evidence to prove that eliminating the financial barrier to access medications can lower healthcare-related costs. A recent initiative led by Dr. Nav Persaud at the University of Toronto studied the benefit of providing free medications to patients through a program called ‘CLEAN Meds’ (Carefully seLected and Easy Accessible at No charge Medications).⁸ Their study found that patients who received free medications had better adherence and reduced healthcare costs compared to patients who obtained their medications through usual access.⁸ Pharmacare can potentially improve medication adherence and health outcomes while also saving the government and taxpayer dollars. However, despite all the potential benefits of Pharmacare, it will be costly to implement. For this reason, it is a highly politicized issue. A 2019 report by the Advisory Council for Pharmacare at Health Canada estimated a cost of 15.3 billion dollars per year to cover prescription medications for all
Canadians.¹ This is a large sum but a significant investment in preventative healthcare. With an aging population and chronic diseases on the rise, preventative healthcare is exactly where I feel our money should be spent.
References 1. Health Canada. A Prescription for Canada: Achieving Pharmacare for All. Ottawa, ON; 2019. 2. Morgan SG, Leopold C, Wagner AK. Drivers of expenditure on primary care prescription drugs in 10 high-income countries with universal health coverage. Cmaj. 2017;189(23):E794–9. 3. Ontario Ministry of Health and Long-Term Care. OHIP+: Children and Youth Pharmacare [Internet]. Drugs and Devices. https://www. health.gov.on.ca/en/pro/programs/drugs/ohipplus/ 4. Migneault J. Cystic fibrosis drug “a relief” for family in North Bay, Ont., but restrictions on cost coverage remain. CBC News. 2021 Oct 4; 5. Ontario Ministry of Health. Get help with high prescription drug costs [Internet]. Available from: https://www.ontario.ca/page/gethelp-high-prescription-drug-costs 6. Law MR, Cheng L, Kolhatkar A, et al. The consequences of patient charges for prescription drugs in Canada: a cross-sectional survey. CMAJ Open. 2018;6(1):E63–70. 7. Cutler RL, Fernandez-Llimos F, Frommer M, Benrimoj C, Garcia-Cardenas V. Economic impact of medication non-adherence by disease groups: A systematic review. BMJ Open. 2018;8(1):1–13. 8. Persaud N, Bedard M, Boozary A, et al. Adherence at 2 years with distribution of essential medicines at no charge: The CLEAN Meds randomized clinical trial. PLoS Medicine. 2021;18(5):1–14.
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How Mindfulness can help Patients in Neurorehabilitation By S. Hussain Ather
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Graphic design by Sherry An
mong its many benefits, mindfulness meditation has been shown to help people experience more control over their attention and emotions while becoming more self-aware as they enter states of relaxation. Recent research suggests that mindfulness meditation may help patients in neurorehabilitation, a set of treatments designed to help patients with impaired central and peripheral nervous systems to regain control over their bodies. In many applications, particularly for patients who may have suffered from stroke or spinal cord injury, they may require brain-computer interfaces (BCIs) to function. A patient using a BCI can use the signals measured from their brain to control computers and other devices such as neural-prostheses for communication, motion restoration to otherwise paralyzed limbs, and neural interfaces for general life improvement. BCI can be achieved through non-invasive means that involves electroencephalogram (EEG) recordings taken through the skull. This approach is safe and convenient compared to more risky invasive methods using a brain implant, but it may take longer to learn and users can vary in proficiency. Through recent research, meditation shows to be a promising way to improve non-invasive BCI performance and helps reduce the time for patients to learn how to effectively use their BCI. In a recent study, researchers found increased activity in the alpha-band region of the spectrum of neural activity, commonly involved with selective attention, for patients who spent time performing intentional mindfulness-based stress reduction (MBSR), a type of mind-body awareness training (MBAT), which corresponded with greater performance for BCI activities in which the patients had to rest.1 Described by MBSR’s founder Jon Kabat-Zinn, American Professor Emeritus of Medicine, as “awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” the training involved a class that lasted two to three hours that met once a week along with a seven-and-a-half-hour silent retreat during the sixth week of the class. The participants were then asked to accurately measure breath counts—a metric commonly associated with greater mindfulness and meta-awareness alongside less mind-wandering. Using the BCI2000
VIEWPOINT software to encode EEG data into computer commands, participants were asked to move a cursor toward a target on a computer screen using their imagination alongside instructions to clear their mind. The participants who performed mindfulness exercises were able to modulate a set of EEG patterns of activity known as the “mu rhythm” with much greater ease than the control group. These are oscillatory patterns of EEG activity in the alpha band (between 8 to 12 Hz) recorded over sensorimotor rhythms (SMRs), primarily involved in real and imagined movements. These findings suggest that behavioral interventions such as MBAT could be done to help patients in neurorehabilitation to maximize the performance of BCI. For patients with impaired nervous system in neurorehabilitation, researchers can study how the signals of interest from the brain correspond to various frequencies across a spectrum of data given by EEG. Should patients be able to exercise greater control over the frequencies emitted by their own brains, they could improve their functional performances when using BCI. In another study, 76 individuals were assigned randomly to either a meditation or control group. With only eight sessions of MBAT, the meditation group showed significantly greater abilities to control BCIs while becoming completely skillful at operating them in a short period of time compared to the control group. “Our findings suggest that, to practice sensorimotor rhythm BCIs—one BCI based on the imagination of actions—the link between one’s mind and their body is important,” said Bin He, Trustee Professor of Biomedical Engineering at Carnegie Mellon University, echoing the role of mindfulness to strengthen the connection between the mind and the body for relaxation and empowerment. Patients who need to imagine themselves moving a limb would benefit from these practices. While previous work has been done in MBSR intervention to tell patients to “rest better,” no differences had been found between the power of the alpha bands of the passive rest between groups after the intervention or throughout the training. In this study, the subjects at intentional (or volitional) rest could increase their alpha power while the scientists recorded
electrophysiological responses. Choosing to rest during mindfulness caused this difference. Other work showing the effects of mindfulness meditation on improving BCI performance include the focused activation of the fronto-parietal region of the brain for motor imagery tasks.2 “In our study, subjects are instructed to be ‘at rest’ without actively imagining limb movement,” said He, on the study of mindfulness meditation, “We then quantified such brain states using EEG spatial mapping and source imaging, and such electrophysiological responses and biomarkers helped us study the brain “at rest”. In addition to health benefits, this research could be used in improving design and maintenance for BCIs. Understanding how areas of the brain change in response to activities such as mindfulness may allow neuroscientists and engineers to increase the effectiveness and efficiency of how BCIs interpret and understand brain signals themselves. BCI recalibration, in particular, can be time-consuming, and optimizing these methods may prove beneficial for their purpose. Though the study by He and colleagues was limited in that the research only focused on sustained attention, rather than all activities involved in BCI control, other increases in performance for patients with MBSR intervention were observed as well. For instance, the researchers noted how individuals could create motor imagery—images produced by activity from the motor cortex by imagining motor movements without moving one’s limbs or external stimuli. They found the patients could also regulate how well they could synchronize the rhythms of neural activity during motor imagery or rest tasks. Future work can be done in studying how MBAT affects alpha-band activity in neural communication for determining the more precise role of neural correlates in activities related to attention such as mindwandering and releasing thoughts. References 1. Stieger JR, Engel S, Jiang H, et al. Mindfulness improves brain– computer interface performance by increasing control over neural activity in the alpha band. Cerebral Cortex. 2021 Jan;31(1):426-38. 2. Tan LF, Dienes Z, Jansari A, Goh SY. Effect of mindfulness meditation on brain–computer interface performance. Consciousness and cognition. 2014 Jan 1;23:12-21.
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Bridging the Gap Improving Science Communication in Public Health
By Madhumitha Rabindranath
early two years into the pandemic, with no immediate end in sight, desperation is present worldwide. The mantras “mask up!” or “get jabbed!” don’t invoke the same tenacity as before. Dissent against public health mandates is increasing, leading to protests. Now more than ever, governments, public health officials, and science representatives need to revamp their messaging to better equip the public for the long-term effects of the pandemic.
At the start of the pandemic, science communication in public health was straightforward despite knowing relatively little information on COVID-19 disease and its associated SARS COV-2 virus. As new evidence rapidly started to roll out, messages became murky and inconsistent.1 For example, Ontario repealed most restrictions quickly in Summer 2021 despite the disapproval from consulting medical experts. With constant changes in health measures, confusion arose, resulting in growing non-adherence to important public practices such as masking and vaccinations. To improve public health communication, heeding the following suggestions would be a start.
Communicate with a strategic purpose Some of the mandates in place were more reactive to specific situations and were not 26 | IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT
immediately intuitive to the public. One example is changing the waiting period for the second COVID-19 vaccine dose from one month to almost three months. The logistics and the science behind this change were not well communicated or consistent, leading to mistrust. Hence, it is important that any public messaging is consistent and transparent.1,2 Every message or document shared with the public must be crafted to have a specific purpose and be easy enough to follow. Discussing 1-2 important topics during press conferences or tweets with sufficient background would be more receptive, preventing an information overload. Consistency does not necessarily mean using a one-size-fits-all approach. Different tactics should also be considered to promote the same message such as leveraging visual representations, narratives and addressing specific social values: All of which are currently underused.2 People respond differently to specific values and sentiments. For example, individuals who value a common good may respond to messages that emphasize everyone’s role in decreasing disease spread compared to some who value individualism. Using different modes of communication may address individual level hesitancy for specific mandates. Relevance to specific geographic areas should also be considered.3 It is not useful to ask individuals to follow stringent rules
in areas of low prevalence. Public health communication should conscientiously consider these specific factors to prevent distilling important messages. Taking a proactive approach to addressing misinformation before it happens is also strategic.2 Trying to constantly address misinformed opinions or conspiracy theories is important but can quickly become futile. Before a well-intentioned campaign against a controversial topic begins, it is already consumed by many individuals and their opinions may be difficult to change. Using a concise and transparent approach to all mandates along with answers for any potential doubts or questions could resolve some dissent. For example, when vaccine mixing was introduced, safety was a major concern for most individuals. Providing an FAQ sheet with creative visuals or leveraging clinicians for dissemination can help provide a consistent and transparent narrative.
Embrace neutrality When some individuals do not follow public health guidelines, it seems easier to start solely targeting this group. We saw instances of this approach taken by some of our leaders in an attempt to guilt people into compliance. This not only led to the polarization of certain groups Graphic design by Amy Assabgui
and vilification from the media but also backfired when several officials decided to go against their own guidelines.4 Using a more nuanced tactic would prevent emotionally charged debates over following mandates as polarizing discussions can further dissuade the targeted individuals from trying to adhere to guidelines. Ultimately, we want as many people as possible to do their part in following public health directives within their own capacity rather than a small group that is perfectly compliant. Neutrality is also important when addressing new and emerging evidence. The research regarding the SARSCoV-2 virus has been changing rapidly as scientists are trying to unravel the unknown aspects of its biology. This requires updating public health measures. These updates need to be executed with caution especially if they are new or speculative.5 For example, public health officials predicting that COVID-19 may become an endemic has the potential to further exacerbate “pandemic fatigue”. We cannot say with confidence that endemicity is close in sight or predict its associated consequences which may or may not work in our favor. At this point, public health measures are still required to be followed and we should continue to cautiously monitor the situation. Without proper guidelines or concrete plans for the public to envision an endemic scenario, it
would be best not to discuss it at all in a public sphere. Speculations and opinions on unknown possibilities can be dangerous in public health communications especially since we are less likely to foresee how the public will react.
Leverage community leaders Although some efforts were made by officials to have community-specific messages, they were insufficient. Other than providing resources in different languages, there has been no effort to use community leaders to facilitate compliance. Some of the campaigns targeted to specific groups or marginalized communities started due to the pure civic duty of healthcare professionals, science communicators, and other notable individuals. For example, doctors of South Asian descent formed task forces in different parts of the country to address the unprecedented impact on workingclass South Asians. As some racialized groups have grown to distrust healthcare instituitions, efforts should be made to contact local leaders, religious heads, and grassroots organizations who have a long-established relationship with the community. This approach can help diversify the means to deliver the same public health-related messages and address the issues faced by hard-hit communities.
With the volatile and fast-paced nature of the current pandemic, it can be difficult to stay on top of the current literature and make conscientious decisions. However, growing unrest and nonadherence to current measures threaten our progress to control this virus. Public health and governmental bodies should consider different strategies to address miscommunication and improve messaging, especially for future health crises. References 1. Hung L, Lin M. Clear, consistent and credible messages are needed for promoting compliance with COVID-19 public health measures. Evid Based Nurs. 2022;25:22–22. 2. Nan X, Iles IA, Yang B, et al. Public Health Messaging during the COVID-19 Pandemic and Beyond: Lessons from Communication Science. Health Commun. 2022;37:1–19. 3. Slavik CE, Darlington JC, Buttle C, et al. Has public health messaging during the COVID-19 pandemic reflected local risks to health?: A content analysis of tweeting practices across Canadian geographies. Health Place. 2021;69:102568. 4. Capurro G, Jardine CG, Tustin J, et al. Moral panic about “covidiots” in Canadian newspaper coverage of COVID-19. PLoS ONE. 2022;17:e0261942. 5. Fischhoff B. Evaluating science communication. Proc Natl Acad Sci U S A. 2019;116:7670–5.
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IMS Faculty Highlights Promoted to FULL MEMBER
New IMS MEMBER
Dr. Ajoy Vincent
Dr. Wilton van Klei
Dr. Sloane Freeman
Dr. Ajoy Vincent is an ophthalmologist at SickKids and an Associate Professor at UofT. His expertise is in inherited retinal dystrophies (IRDs) and electrophysiology. His research is on Lipid Dysregulation in IRDs and missing heritability in IRDs.
Dr. Wilton van Klei is a specialist in perioperative medicine. His interests focus on improving care for high-risk surgical patients, and involve multidisciplinary collaborations in the field of cardiovascular perioperative medicine.
Dr. Sloane Freeman is a full-time pediatrician at St. Michael’s Hospital. She is the founder and lead of the Reach School Network which focuses on developmental and mental health care for students facing barriers to accessing health care.
Dr. Lena Serghides
Dr. Reina Bendayan
Dr. James Jung
Dr. Lena Serghides’ research focuses on understanding the mechanisms that contribute to the increased risk for adverse birth outcomes in women living with HIV, and on the long-term effects of in utero exposure to HIV antiretrovirals.
Dr. Reina Bendayan is a Professor in the Department of Pharmaceutical Sciences, Leslie Dan Faculty of Pharmacy. Her research is focused on Membrane Transport and Therapeutics with an emphasis in HIV/AIDS Antiviral Drug Transport and Regulation.
Dr. James Jung is an Assistant Professor and a Surgeon-Scientist at St. Michael’s Hospital. He obtained his PhD in clinical epidemiology. His research interests are in using machine learning for early detection of clinical deterioration in surgical patients.
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Graphic design by Amy Zhang
Dr. Tim Van Mieghem
Dr. Ashwin Mallipatna
Dr. Asim Ali
Dr. Tim Van Mieghem (MD, PhD) is a clinician investigator at Mount Sinai Hospital. His translational research focuses on the prevention and prenatal treatment of fetal spina bifida and other central nervous system anomalies.
Dr. Ashwin Mallipatna is a pediatric ophthalmologist at the Hospital for Sick Children, leading the Retinoblastoma Program. He has a keen academic interest the early detection of childhood blindness, and the staging of retinoblastoma.
Dr. Asim Ali is the Ophthalmologistin-Chief at the Hospital for Sick Children. His research focuses on complex anterior segment disorders in children including cornea, cataract, glaucoma and congenital abnormalities.
Dr. Amanda Ricciuto
Dr. Nadine Abdullah
Dr. Patrik Rogalla
Dr. Amanda Ricciuto (PhD Clini Epi) is a gastroenterologist at SickKids. Her research is focused on inflammatory bowel disease and primary sclerosing cholangitis. Her methods include cohort studies, health services research, and translational research (e.g. multiomics to understand pathogenesis, predict treatment response).
Dr. Nadine Abdullah is a clinician educator in the Division of General Internal Medicine. Her scholarly interests are medical education qualitative research, and narrative medicine exploring aspects of competency not assessed in the CBD framework.
Dr. Patrik Rogalla (MD, PhD, MBA) is the Deputy Head of Innovation at the Joint Department of Medical Imaging and Professor of Radiology at UofT. His research focuses on clinical tool development and visualization techniques to innovate radiology practice. IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT | 29
Expanding the boundaries of personalized medicine with
Dr. Ahmed Hassan
By Sonja Elsaid
oday, personalized medicine involves leveraging breakthroughs in science and technology to tailor medical treatments to each patient. It relies on understanding how a person’s unique genetic and biological traits predispose them to risk factors for certain diseases. It enables healthcare workers to better predict condition susceptibility and customize safer treatments in order to improve patient care. The public’s expectations of healthcare, however, do not necessarily center on technological advancements. Instead, patients prefer the holistic approach to treatment. To discuss the successes of developing such a holistic program that encourages seeking treatment for addictions in the Canadian Muslim Community, IMS Magazine has interviewed Dr. Ahmed N. Hassan. Dr. Hassan is an Addiction Psychiatrist and Clinician Scientist at the Centre for Addiction and Mental Health, Assistant Professor at the Department of Psychiatry, and Associate Professor at the Departments of Pharmacology and Toxicology and Institute of Medical Science at the University of Toronto. “I am passionate about helping people, and I want to make an impact in their lives,” said Dr. Hassan. “I am also interested in exploring different treatment modalities that integrate biopsychosocial and spiritual influences on health. What drew me to psychiatry was the ability to take a multidisciplinary approach to care.”
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His passion for psychiatry motivated Dr. Hassan to complete a psychiatry residency, mood and anxiety fellowship, and addiction fellowship at the University of Toronto and even obtain a Master’s degree in Public Health at the John Hopkins Bloomberg School of Public Health in Baltimore, Maryland. “Public health has a special place in my heart,” Dr. Hassan echoed. “We need to understand why people regularly drink alcohol before treating the addiction. Research on prevention informs policies and saves lives. Public health knowledge helps prevent substance use disorders or eases them by anticipating the risk factors.” Dr. Ahmed Hassan’s passion for treating and preventing, sometimes deadly, addictions led him to develop a spirituallyadapted addiction psychoeducational program delivered to Muslims in the mosque setting. Dr. Hassan explains, “Muslims are a highly marginalized community in Canada. They are faced with discrimination and Islamophobia in general leading to mistrust of the healthcare system. They experience difficulties connecting and communicating with others to access treatment. Also, Islam forbids drinking alcohol and using illicit substances. In the Muslim community, there is so much stigma towards addictions. So, when addiction occurs, it stays private, and those with the addiction become trapped. They do not know where to go for help. When they eventually seek help, the addiction is usually medically and psychologically very complicated.”
To overcome the barrier related to mistrust towards Western teachings, the psychoeducational program involved a seminar that integrated readings of the Quran and the Prophet Muhammad’s teachings from the Hadith with scientific evidence about addictions. It emphasized the parallel between the gradual prohibition of alcohol in the Quran to different stages of alcohol treatment. The program promoted thinking of addiction as a disease that needs treatment, rather than something that brings shame. By integrating the Islamic content, the program also reminded individuals that asserting incredible compassion and understanding when dealing with people with addiction follows Islamic principals and values. Furthermore, Dr. Hassan also conducted a study that assessed the program’s impact by measuring attitudes towards addictions before and after the program. The research results indicated significant improvements in the knowledge of addictions and an increase in positive attitudes towards addiction. More participants expressed their willingness to seek professional help and support others with addiction. Dr. Hassan and his team also received valuable information from the various stakeholders on improving the study and program participation in the Muslim community. “At the beginning of the program,” Dr. Hassan describes, “we thought about renting a private hall where our program would be held. However, we realized Graphic design by Sherry An
Another challenge was getting people to trust us not to share their research study responses and personal information with others. We even had to modify our consent form to emphasize that no personal information would be released to their employers and the community.”
DR. AHMED N. HASSAN MD, MPH Addiction Psychiatrist and Clinician Scientist at the Centre for Addiction and Mental Health | Assistant Professor at the Department of Psychiatry | Associate Professor at the Departments of Pharmacology and Toxicology and the Institute of Medical Science at the University of Toronto. Photo provided by Dr. Ahmed Hassan
that the best time and place to hold our seminars were at the mosque after the Friday prayer. People socialized then, talked to the Imam, and learned about the program. Having the program at the mosque brought a holistic experience.
Dr. Hassan also learned that conducting a needs assessment prior to designing the study was essential for recruiting the Muslim community members. “When engaging religious communities, it is imperative to share the content of your program to gain support from the religious leaders. Then, have an informal conversation with the community members and various healthcare workers that provide treatment. They all have a different perspective on applying the intervention to the Muslim community. You, as a leader of the program, have to listen, gather information, and develop a plan that would mitigate the cultural, religious barriers, fears, and prejudices towards seeking treatment.” Dr. Hassan also stressed the need to be creative and versatile with the knowledge of different health modalities so that they could be integrated efficiently into a holistic program. “Personalized medicine is the way of the future in healthcare,” echoed Dr. Hassan. “But, it is not confined to just science and technology. It constantly changes, and makes us consider everything that influences health. To tailor the treatment to a particular patient population, you have to keep expanding the boundaries of what personalized
medicine is known to be today. As a leader of such a holistic program, you also need to be skilled enough to be able to deliver such holistic healthcare.” When asked how to become a successful researcher and/or clinician in the holistic healthcare environment, Dr. Hassan offered the following advice to IMS students: “Keep your mind open about learning new skills. Learn about different research methods. Be persistent and never give up when trying new things. Eventually, you will integrate all your skills in the field you choose to pursue. Also, take the opportunity of being an IMS student. It is a great environment to learn from such professionally diverse faculty.”
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In remembrance of talent, commitment and kindness:
The Jasmine Quigley Memorial Award By Beatrice Ballarin & Laura Best
his is the story of a talented girl. A girl with a gentle soul who was bright and kind, who loved and is loved, who was full of questions and contradictions. This is the story of Jasmine Quigley and her memorial award. Jasmine, or Jaz, to her friends, was an introvert. Though shy, she appeared strong and confident to her friends and peers. Thrilled to have been accepted to the UofT bioengineering program, she was excited to be a part of the Skule community. You may have even seen her in her first year around campus, all purple like the tradition demands. One of the STEM girls–smart and hard-working. As fellow UofT students, we know the commitment and discipline required to get into–let alone succeed in–this prestigious program. Though her natural talent was undeniable, Jaz had worked hard to get into this program. To finally have made it into such an important school! A brief celebration before the hard work began. Though the demands of bioengineering are high, it didn’t seem to be a problem for Jaz. She was the one that appeared to have it under control. Sleeping early and waking earlier, she was always ready for class or to squeeze in a quick hour of studying before the day truly began. She wasn’t a last-minute kind of student nor a puller of all-nighters. She was hard-working. She knew herself and had high expectations. She preferred to sacrifice time out with friends to get her schoolwork done–one-max-two bubble teas per semester. And she was okay with that. School came first, that was her rule.
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She was a perfectionist, always on top of the workload, always organized, and calm as deadlines approached. At least, this is how she appeared to friends and peers. Who knows how she must have really felt about it all? She kept to herself, to the point that she appeared to have it all under control. Always a support for her friends. Maybe she really did have it all under control? She was the one keeping her friends afloat during those early weeks of first year bioengineering. That’s who Jaz was, so kind, so caring. Competitive, but only with herself, and always very kind to the others. She was the friend, classmate, or lab-mate that everyone hoped to meet. She was a role model for those around her, and yet so young and so lost. Did she have it under control? Maybe. Maybe she had a hard time reconciling this deeper aspect of her character, her own deep sadness, with the great student that she was and all of her achievements. It’s not an easy task, after all. Maybe she was too focused on her school, her future career and caring for others to think about herself, her own needs. Maybe. And still, nobody noticed this internal battle that threatened to crack her exterior. Would you have? One thing is for sure: Jaz was an excellent student, and not only by GPA standards. This happens when you are simply that smart, things come easy to you. She could solve lab problems for her friends while just passing by and thinking for a second. That’s it, that smart. It happens; those students are rare, but they exist, and Jaz was one of them. Bright, kind, and…deeply sad.
Photo Credit: Peter Quigley
Like all of us, Jaz was wondering about her future. What would come of her after those years at UofT? What would her career be like? From the girl that could do anything, how did she see herself in the future? Curious about research in bioengineering and medicine, Jaz decided to follow her passion. Rather than applying for one of those well-paying summer jobs for engineers, those jobs that pay enough money to live like a Queen for the rest of the year, she enrolled as a summer research student earning $800 per month working at least 8 hours a day, if not more. Despite her father’s initial surprise, being a software engineer himself, Jaz didn’t mind earning less than one month’s rent in Toronto. She felt it was the right way to spend her summers, investing in herself and her future, allowing her curiosity to dictate her next steps. And Graphic design by Amy Zhang
those were fun summers! As you might expect from such a bright young girl, Jaz completed her summer project after only 6 weeks in the Hodaie lab at the Krembil Research Institute. Dr. Hodaie, a neurosurgeon scientist at Toronto Western Hospital still remembers her fondly. She had to give Jaz a second project, Dr. Hodaie recalls, because she completed the first too quickly… She could give her something more complex. She remembers Jaz as a young student, incredibly bright, who quickly became an integral part of her research team. She saw something special in Jaz and wholly supported her application to the MIT research program. When Jaz finally confessed her pain to her one close friend, it may have already been too late, the suffering too deep. There is no right or wrong here. Stigma and the fear of it, fear of faltering, is a serious beast–and Jasmine knew about it. She was ashamed of it and it concerned her. What would people think? She could barely accept this herself. She kept a brave façade for so long. She was suffering in silence, quietly, composed, as her nature dictated. But still struggling to reconcile the brilliant, passionate student with the consuming sadness and lack of fulfillment that continued to grow within, her deep contradiction. She was the stellar student; surely her mental health wasn’t a concern, right?
soul. It is just, hard. She had so much potential. She had already accomplished so much, and she had so long to live. Who knows how much she could have achieved? But being human means having innate contradictions, beautiful and complicated and painful. A common thread of existence that can be so difficult to reconcile in ourselves, in others. It is impossible to know how another is feeling, so what can we do? How can we create space to support and connect? To heal? To remember those that we have lost… And it is here that the memorial award takes place in this sad story, with the hope of finding a small light in the darkness. The Jasmine Quigley Memorial Award has been created by and her family and Dr. Hodaie to keep alive Jaz’s commitment to research; to support bright summer students that, like Jasmine, prefer to spend hot summer days in a lab devoted to researching mental health and neuroscience. This award is here because
we don’t want to forget the hard work of students as passionate as Jaz. It serves to remind the winners that their work is valued, to celebrate them and encourage them to keep going. It serves as a reminder to us all to value the contradictions that make us human. Always remembering their daughter, and their classmate, and their friend Jaz. Here’s to the next Jasmine Quigley Memorial awardee: be proud of yourself, of the work you have done this summer and your impact on the world—keep going. To learn more about the Jasmine Quigley Memorial Award, please visit: https://ims.utoronto.ca/giving. To make a gift in support of Jasmine Quigley Memorial Award, please contact Michelle Fong, Senior Development Officer in the Faculty of Medicine at: email@example.com.
Yet it happens. Both things can be true; there’s no right or wrong answer. It is difficult for us, as witnesses to this story, to accept the loss of such an intelligent, beautiful, kind, young
Inaugural Jasmine Quigley Memorial Award at the SURP 2019
Photo Credit: Michelle Dubinsky IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT | 33
Making the Jump from Academia to Management Consulting: A Discussion with Dr. Karolina Bidzinski
By Carmen Li
re you considering healthcare management consulting as a career path but uncertain about making the switch? IMS Magazine interviewed Dr. Karolina Bidzinski, a Management Consultant in the Healthcare Solutions, Operations practice at KPMG Canada, to provide advice on opportunities to explore the world of management consulting as a graduate student. Healthcare management consulting is the process of guiding healthcare organizations to make business-savvy decisions and maintaining the welfare of staff and patients. Healthcare consultants are experts in the industry—they have in-depth knowledge of healthcare laws, regulations, and policies to help medical organizations and hospitals run efficiently and effectively. For example, they may work with clients to align their clinical operating model to their strategic and financial objectives. Remarkable, right? However, as an IMS student with an interest in pursuing consulting after their MSc. or Ph.D., how do you get started? How do you make the leap from working in an academic laboratory to brainstorming strategies to streamline the operations of a healthcare organization?
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For IMS alumni, Dr. Karolina Bidzinski, the switch from academia to consulting took a great deal of persistence and networking. It also took active participation in skill-building opportunities hosted by the Graduate Management Consulting Association (GMCA) at the University of Toronto. As Dr. Bidzinski may tell her own mentees, making this kind of career switch is possible for anyone; it just takes strategy and determination. To give background, Dr. Bidzinski describes her experiences during her graduate studies and initial interest in industry careers. To start, she points out that the majority of her M.Sc. and Ph.D. research is published under her maiden name Kozak. Dr. Bidzinski has a H.B.Sc. with a Specilization in Biology from the University of Western Ontario. She then came to Toronto to complete both her M.Sc. and Ph.D. under the supervision of Dr. Tony P. George at the Center for Addiction and Mental Health (CAMH). For her M.Sc., Dr. Bidzinski conducted clinical research investigating the effects of pharmacotherapy on cognitive functioning in a subset of schizophrenia patients. Her following Ph.D. project assessed the effect of repetitive transcranial magnetic stimulation on cannabis use and cognitive outcomes in schizophrenia patients with a cannabis use disorder. During
the start of her Ph.D., Dr. Bidzinski started exploring potential careers. “As rewarding as executing clinical trials and publishing research is and observing the positive outcomes amongst patients that surface with some of the research that you complete,” but there was something missing. She explained, “I wanted to pursue a career with a more immediate impact. I came across a U of T student group, the GMCA. They are an organization that aims to bridge the gap between academia and consulting.” By engaging in activities presented by GMCA, Dr. Bidzinski noted that she had the opportunity to figure out whether or not consulting was for her and even which sector of consulting she was most interested in pursuing. She recalls attending their networking events, case competitions, and completing GMCA’s business fundamentals course, a “mini-MBA” (so to speak). Through her involvement in so many different activities with the GMCA, Dr. Bidzinski realized her passion for consultant work. Combined with her six and a half years of clinical research experiences, she knew healthcare management consulting was the perfect niche. However, how would another IMS student know if consulting is right for them? What if you are unsure about what sector you want to pursue, such as finance or healthcare? Graphic design by Mimi Guo
and developing fundamental business skills. For example, GMCA’s first business fundamental course session focuses on case analysis. Case studies are presented in interviews or case-study competitions, where a real-time problem-solving scenario is presented to assess candidates for their ability to succeed in consulting. The case is often an open-ended question, usually a problem that a business faces that the candidate is asked to solve. If you are preparing for an interview with a case analysis component, practicing such cases ahead of time is recommended to succeed in your interview.
Dr. Karolina Bidzinski Ph.D.� M.Sc. H.B.Sc. Management Consultant Healthcare Solutions, Operations, KPMG Canada Photo Credit: Karolina Bidzinski
In response to this question, Dr. Bidzinski suggests that interested students should access digital or local resources as a starting point. Part of participating in activities like the ones hosted by GMCA is learning about the various consulting jobs. Additionally, the content presented on platforms such as Youtube, Coursera, or LinkedIn are also viable for learning about the job
If you are still unsure, Dr. Bidzinski suggests seeking professionals on LinkedIn or through GMCA’s (or student groups alike) networking activities to schedule coffee chats. Dr. Bidzinski remarks that it requires more than merely networking with professionals in her field of interest; candidates should also learn to think with a “business mindset.” Coffee chats offer an opportunity for you to learn about individual workplaces and consulting firms answering questions like: Does the firm have a specific division/sector for healthcare management? How does the firm provide opportunities for professional development? Dr. Bidzinski also suggests for students to get some form of relevant consulting experience (e.g., pro bono work). You can always try a job out before further pursuing it.
When asked what she predicts the challenges are for healthcare services and healthcare management consulting in the future, Dr. Bidzinski points out the adoption of digital solutions due to the COVID-19 pandemic. Specifically, there is a shift towards hybrid online and in-person healthcare service models. She also mentions the potential to accelerate existing transformational changes that were already underway in more mature healthcare organizations. Though this shift was predicted to occur further in the future, the need for accessible digital services has accelerated it. Adapting to meet this need may potentially be a focus for healthcare services and consultants alike. So, what can we learn from Dr. Bidzinski’s advice? Perhaps, we cannot leap into another career field right this instant. However, we should not discredit our current experiences in academia and the option to learn about alternative careers. It is crucial to network and take advantage of programs like the GMCA! This advice can help you start building the skills needed to transition from academia to a consulting role well in advance. The opportunity to explore various industry careers and develop meaningful skills is something we can all pursue now.
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DIVERSITY IN SCIENCE
Addressing Medical Mistrust within Black and Indigenous Communities
By Shu‘ayb Simmons
Introduction: Medical Mistrust Within Black and Indigenous Communities
lose your eyes for a second and imagine you are in the waiting room for a checkup. You patiently sit, waiting for the nurse to call out your name so that you can begin walking into the doctor’s office. But, upon entering, you see your trusted doctor ready to inject you with dangerous substances. Sound like a nightmare? For Black and Indigenous peoples, who were the subjects of many non-consensual experiments in the past, this is a real fear. Even currently, healthcare quality is disparate across the racial majority and minority groups. These transgressions fomented feelings of medical mistrust within Black and Indigenous communities. This article aims to discuss the existing medical mistrust within Black and Indigenous communities and provide potential avenues to mitigate its consequences.
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Getting into it: Medical Mistrust Medical mistrust is a noticeable lack of trust and suspicion with the medical system,1 usually caused by the medical system itself. It can stem from various sources, for example, a lack of education—a socioeconomic barrier—can lead to medical mistrust. A key factor behind medical mistrust, however, is history. Communities previously betrayed by the medical system are less likely to trust healthcare. In a study published by the American Journal of Public Health, it was found that Black individuals are more likely to distrust physicians than their white counterparts.2 This mistrust proves detrimental in the long term as Black, and Indigenous individuals are more likely to under-utilize psychiatric help.1,4 In this manner, medical mistrust is a social determinant of health. It plays a role in racial disparity across illnesses,2 so much so that it intertwines with long-term non-adherence to HIV medication among Black males positive for HIV.3 The primary victims of medical mistrust are Black and Indigenous
communities and, to a lesser extent, sexual minorities.1,4
Looking Back: Medical Violence Towards Black and Indigenous Communities To understand the basis of medical mistrust in Black and Indigenous communities, we need to look back at historical acts of medical violence against these populations. The Black populace has been subject to much medical violence and betrayal by healthcare, the most prominent and evident of which is slavery. Another particularly stark example is the Tuskegee Syphilis Experiment, which ran from 1932 to 1972. Here, scientists tricked 600 men (399 with syphilis, 201 without) from a Black community in Tuskegee, Alabama into participating in an observational study under the pretense that it was a “bad blood” treatment. As the virus took its course, they were observed and not given penicillin even as the symptoms grew more severe. Out of the experimental group of 399, only 74 survived. Funded by the U.S. Public Health Service, the Tuskegee Graphic design by Mchie (Xingyu) Wu
DIVERSITY IN SCIENCE
Experiment is now regarded as an ethically egregious study that violated countless bioethical principles of research. However, the melody of this and all other medical pain lingers on in Black communities. Similar acts of medical violence against Indigenous communities exist as well. Canadian Indigenous people were disproportionally forcibly sterilized under the Sexual Sterilization Act of 1928.5 However, forced sterilization of Indigenous peoples is not merely a thing of the past; in 2017, 60 Indigenous women from Saskatchewan sued their provincial government for coercion into imposed sterilization.6 The Indian Act of 1876 is also an act of medical violence that played an axiomatic role in fostering medical mistrust within Indigenous populations. This act gave all the First Nations’ health responsibilities to the federal government,7 effectively stripping these communities of their agency. Although changed, the Indian Act still exists today. Within medical research, the Havasupai diabetes project is a key example of medical
violence and betrayal against Indigenous communities. In 1989, the Havasupai Tribe in Arizona donated blood to researchers at Arizona State University to search for a link to diabetes–a disease ravaging the community–but used the samples to search for markers of other illnesses.8 Altogether, these numerous acts of medical violence compound and play a substantive role in propagating medical mistrust.
Moving Forward: The Consequences of Medical Mistrust and Repairing the Trust Medical mistrust affects the likelihood of Black and Indigenous individuals seeking help, aggravating prominent disparities.9 To reduce the trickle-down effects of medical mistrust that further racial disparity, the first step is to acknowledge the issue and educate oneself on its historical background. As medical researchers, it is paramount that we consider healthcare history towards Black and Indigenous individuals, especially when conducting clinical research. In
doing so, we favour equitable health outcomes and actively show Black and Indigenous communities that healthcare is trustworthy, cognizant of prior misdeeds, and racially conscious. References 1. Jaiswal, J., & Halkitis, P. N. (2019). Towards a more inclusive and dynamic understanding of medical mistrust informed by science. Behavioral Medicine, 45(2), 79–85. 2. Armstrong, K., Ravenell, L., McMurphy, S. et al. (2007). Racial/ethnic differences in physician distrust in the United States. American journal of public health, 97(7), 1283–1289. 3. Dale, S. K., Bogart, L. M., Wagner, G. J., Galvan, F. H. et al. (2014). Medical mistrust is related to lower longitudinal medication adherence among African-American males with HIV. Journal of Health Psychology, 21(7), 1311–1321. 4. Aboriginal Multi-Media Society. Compiled by Shari. (2013). Racism, mistrust keep Aboriginal people from health care. Ammsa. com. 5. Black, A., Rich, R., & Felske-Durksen, C. (2021). Forced and coerced sterilization of indigenous peoples: Considerations for Health Care Providers. Journal of Obstetrics and Gynaecology Canada, 43(9), 1090–1093. 6. CBC Radio Canada. (2018, November 13). Indigenous women kept from seeing their newborn babies until agreeing to sterilization, says lawyer. CBC Radio. 7. Government of Canada. Indian Act, 1876 R.S., c. I-6, s. 1. 1876. 8. Sterling, L. (2011). Genetic Research Among the Havasupai: A Cautionary Tale. AMA Journal of Ethics, 13(2), 113–117. 9. Mental Health America. (2019). Black and African American communities and Mental Health. Mental Health America.
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Five Little Indians by Michelle Good Serena’s Pick
By Serena Peck
first picked up this book in January 2022 as part of the Institute of Medical Science Student Association (IMSSA) EDI book club. Five Little Indians, written by Michelle Good, is a fictional exploration of children’s lives in and outside of residential schools set in the 60’s. Michelle Good is a Cree writer, lawyer, and member of Red Pheasant Cree Nation in Saskatchewan. The novel follows the stories of Kenny, Lucy, Maise, Clara, and Howie as they are taken to a residential school on Vancouver Island, Canada. We travel through the children’s lives from their point of view as they are either released or escape from the residential school to the Downtown Eastside of Vancouver. Each of the stories are interwoven and the novel switches from the past to present throughout. The characters may travel to different locations throughout their lives, but they are haunted by similar trauma. Five Little Indians is a fantastic portrayal of the hardships and abuse these “survivors” suffer during and after their time in residential schools. Their stories highlight the physical, emotional, sexual, verbal, and systemic abuse they face inside and outside of these schools. Their pain and suffering do not end once they are physically “free” from the school. I think the most powerful message this book portrays is how damaging the residential school system is and the how the Canadian government failed to support these “survivors”. The characters
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portray the real hardships faced by survivors as they are left with no social or financial assistance to transition into the world outside of the residential school system. The following quote stood out to me the most as it is filled with such honest reflection, Lucy leaned back in her chair, hands folded in her lap. “They call us survivors.” “Yeah.” “I don’t think I survived. Do you?” Reading this novel also made me reflect on what I had or had not learned on this topic growing up in Canada. I only started to educate myself on this topic in my adult life. Reading Five Little Indians has encouraged me to continue educating myself and reading books by Canadian Indigenous authors. Due
to the fictional nature of this novel, it may be an easier read for those who are interested in learning about the residential school experience for the first time. The characters are formed with compassion, and it is written in a non-judgmental tone. For anyone reading this book, no matter your prior knowledge of the topic, I think it will make you look deeper into the systemic issues surrounding indigenous culture that remain present today in Canada. Residential Schools were created in 1886 under the Indian Act. For more information on the Indian Act another book recommendation is “21 Things You May Not Know About the Indian Act: Helping Canadians Make Reconciliation with Indigenous Peoples a Reality”. To hear stories on what the experience is like, I recommend Five Little Indians as a powerful exploration into the lives of the residential school “survivors”.
Five Little Indians
Book Cover (Left) Author: Michelle Good (Right) Graphic design by Mimi Guo
Madrid to Toronto via London, and other detours on an international student’s journey towards a PhD By Iciar Iturmendi-Sabater
here is no direct flight from Madrid to Toronto so on January 31, when I was finally moving to Canada to start my PhD, I had a layover in London. I was in Heathrow International airport for the last time in March 2020. Maskless and naïve, I expected to come back to London in a couple of weeks once the pandemic ended, as that is where I was living back then. In the meantime, I would stay with my family in Spain. But I never returned to my life in London. In fact, I was just back for a few hours on my way to a city that has just become my new home: Toronto. Lately, I have decided there is no need to plan every move or trip with detail. COVID-19 has taught me to pull through uncertainty. My PhD was meant to start in September 2021, but I didn’t get my study permit invitation until the 24 of December. My family and friends in Madrid celebrated, “What a great Christmas present!” But I thought it could have arrived on time and saved me a few months of confusion. I booked my flights in order to make it for the January registration deadline. And guess
Graphic design by Amy Assabgui
what: I tested positive for COVID-19 one day before my trip – as if the universe was trying to keep me in Madrid. I actually thank the universe (also known as the irritatingly slow processing times of Immigration, Refugees and Services Canada) for keeping me in Madrid for longer than expected. Spending some months back home helped me settle down, after having moved around different cities for the past ten years. When I applied to this PhD program, I was conducting my Master’s thesis research in New Haven, Connecticut. When I applied to my Master’s, I was studying abroad in Santiago, Chile. When I applied to my undergraduate, I was living in Houston, Texas. I did my undergraduate in Pamplona, Spain. I have lived in seven different cities in the last ten years. I have moved countries three times since the pandemic started. But I was born in Madrid. Please, don’t ask me if I am a Real Madrid supporter (I am not). But if you asked where I am from and where the people I love are, that is unquestionably Madrid.
Who would have guessed that setbacks in the study permit application process and living through a pandemic would renew my sense of belonging? Organizational skills, carefulness, and attention to detail are essential qualities to becoming a good academic. Yet, crystallization of these abilities at the expense of spontaneity will literally take you nowhere. Forget about traveling or moving to another country. At the same time, moving and traveling fosters the curiosity and creativity necessary to formulate great research questions. And so, I wonder: may this be a reason why a greater proportion of international versus domestic students stay in academia after their PhD?1 References 1. The Expert Panel on the Labour Market Transition of PhD Graduates, 2021. Degrees of Success. [online] Council of Canadian Academics. Available at: <https://www.cca-reports.ca/reports/ the-labour-market-transition-of-phd-graduates/> [Accessed 14 February 2022]
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RAW TALK PODCAST
Where do I thrive the most? By Vaidhehi Veena Sanmugananthan & Noor al Kaabi
here do I thrive the most?” a simple question that has been on my mind lately. One accompanied by others, who am I? What sorts of things do I value? What sorts of places set me up for success? It would be easy if every scenario I faced met my expectations for the ideal place to thrive in, but that isn’t necessarily the case. As a graduate student, I’m constantly pushed to thrive and succeed but am equally set up to be challenged and question my place in academia. I know I’m not alone in this train of thought. In episode #103 of Raw Talk Podcast: Raw Talk Roundtables: Underrepresentation in STEM, our guests discussed some of the challenges students from underrepresented backgrounds in STEM (science, technology, engineering, and mathematics) face in their environments, such as lack of representation, community, isolation, imposter syndrome, and many other topics. Our team was asked to think about where we felt we thrived the most. Here’s what they had to say:
“I thrive the most when I feel like I can speak my mind. When I’m in spaces where I feel like I have to think too much about how other people perceive me, I never get my ideas across as I want them to... I’m a bit more cautious with the language that I use. But… when there’s people around me that make me feel like I can have a conversation about whatever comes to mind… I can truly be myself.” ~ Noor Al Kaabi 40 | IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT
Often many of us attribute the inability to speak our minds in certain situations to our lack of capabilities. In the world of STEM, this is seen as a reflection of the Imposter Phenomenon. The Imposter Phenomenon or Imposter Syndrome is associated with feelings of self-doubt, fraudulence and personal incompetence and can contribute to hesitancy in voicing our opinions in specific environments. I never liked the term “Imposter Syndrome” as it makes it sound like there is something innately wrong with you. Noor’s statement, however, is a good reminder of the often-neglected reality that external factors can just as equally contribute to our inability to express ourselves. As much as we may feel accountable, the people around us could also contribute to this challenge. As Noor mentions, the people and space around her contribute to when she feels like she can truly be herself. In the context of underrepresentation in STEM, it is important to consider how we can ensure that people from underrepresented groups are in environments where their ideas are valued.
“I thrive the most in environments that support learning. I love being able to learn new things… and I love when making a mistake is not the end of the world… being able to like trial and error and just learn new things, without the pressure of… getting it right all the time.”
It’s hard to believe that being in an environment where you can make mistakes can be valuable. Intuitively making mistakes seems like a negative experience, however these experiences allow you to learn and grow. With that being said, it is not always easy to see things this way. On the episode, Mohsen Poorganji, the president of the International Students Group at the Institute of Medical Science shared some of the challenges that international students face when coming to study in a new country. “They are at the disadvantage of not knowing the culture around here. I’m talking about both academy culture…[and] culture at the society level.” In fast paced and highly competitive environments like STEM, many international students have to face a cultural change and/or language barrier, all while trying to succeed in their fields. I can only imagine that these situations make for little room to struggle when you are also in a field that is highly demanding. This urges me to think about whether institutions or workforces in STEM provide proper accommodation to support the learning of international students. It makes me wonder, how do we create environments where people have equal opportunity to make mistakes comfortably?
~ Atefeh Mohammadi Graphic design by Sherry An
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“I thrive the most when I feel included. The idea of just having... the food you eat, the clothes you wear, the ethnic group you belong to, the gender you identify with, the religion you practice being all assets… you bring all those things into the space that you occupy, and you’re included for the whole package.” ~ Rachel Peiris Layan Elflaki, President of the Black Graduate Student Association, mirrors Rachel’s perspective and gave her opinion on what diversity means to her: “To me, diversity means having individuals from different backgrounds within your space. I feel like diversity also goes hand in hand with inclusivity… having more heterogeneous environments… where individuals feel safe and comfortable voicing their opinions.” I think that inclusivity and diversity go beyond just allowing a sense of comfort that encourages people to voice their opinions. Instead, it opens the door for more enriching and diverse outcomes which include multiple interdisciplinary perspectives. It is important to remind ourselves, we are a product of our life experiences. Each of us has something to bring to the table, and our unique perspectives forged from these experiences can enrich the work we do. Homogeneous environments that do not take these perspectives into consideration, are missing out on opportunities to expand and grow.
So, where do I thrive the most? I thrive the most in environments that encourage creativity. Creativity requires you to deviate away from traditional ways of thinking and to formulate unique ideas. To feel comfortable expressing creativity, one must feel that they can easily speak their mind, be supported in their learning, and feel like they are included for who they are and the ideas they bring. Many of our needs go hand in hand for the best environments for us to thrive. I hope my reflection challenges you to think about where YOU thrive the most.
References 1. Imposter Syndrome Imposter Syndrome: What It Is & How to Overcome It. https://www.healthline.com/health/mental-health/imposter-syndrome. Accessed 1 Mar. 2022. 2. IMS International Student Group About Us – IMS International Community. https://ims-international.ca/about/. Accessed 1 Mar. 2022. 3. U of T Black Graduate Student Association “UofT’s Black Graduate Students’ Association (BGSA) (@BGSA_UofT) / Twitter.” Twitter, https://twitter.com/BGSA_UofT. Accessed 1 Mar. 2022.
We would like to acknowledge the efforts and ideas of the rest of the episode #103 team. Daniel, Rachel, and Atefeh were Show Hosts and/or Content Creators on the episode. Jesse and Noor are our Co-Executive Producers. To learn more about the experiences of underrepresented voices in STEM, we invite you to listen to episode #103 of Raw Talk Podcast, titled “#103 Raw Talk Roundtables: Underrepresentation in STEM”. Also, check out our references for more information on the bolded topics, as well as some interesting resources the team has compiled in the episode’s show notes on the Raw Talk Podcast website.
IMS MAGAZINE SPRING 2022 PATIENT ENGAGEMENT | 41
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