Meaningful, impactful cardiovascular research must be grounded in the needs and priorities of patients, caregivers, and family members (People With Lived Experience, or PWLE). The voices of PWLE must be present as research is conceptualized, funded, executed and evaluated. An engaged and “partner-ready” community of PWLE partners who can be active and engaged members of research initiatives is needed to maximize the impact of research, meet the needs of research funders and assure the centrality of PWLE perspectives.
This free, day-long workshop is designed to train PWLE to be active and engaged members of research teams and to begin to build a community across Canada.
This “engaged and ready community of PWLE partners” will serve as a key step toward meeting the Canadian Institutes of Health Research’s (CIHR) strategy for patient-oriented research, which asserts that research be conducted with patients rather than to them. It is also central to the vision and value of the partners: HeartLife Foundation, CHF Alliance, and TRANSFORM HF. By building and supporting a vibrant PWLE partner community, we hope to foster more responsive research that best meets the needs of all people in Canada.
This MasterClass is meant for those who are living with cardiovascular conditions. Together, we will: explore the fundamentals of Canada’s health research landscape, focusing on PWLE engagement at all stages of the research process; hear about the roles and real-world impacts of PWLE partners in cardiovascular research; share practical strategies on how to identify and overcome engagement barriers; and discuss key resources to support meaningful PWLE engagement.
Designed to be accessible, this comprehensive training will break down research jargon and pair theoretical and conceptual content with practical, applicable information. The use of experiential learning and case studies will allow participants to consider first-hand what it means to be a patient partner in health research, identifying areas of strengths and further learning for themselves. Group engagement will facilitate peer guidance, deepen learning, and contribute to building a cohesive, engaged community of PWLE partners.
Designed as a day-long, in-person workshop, this MasterClass will utilize multiple interactive strategies:
Abhinav Sharma is a cardiologist and an assistant professor in the division of cardiology at McGill University. He completed his medical school and internal medicine from McMaster University and his cardiology fellowship from the University of Alberta. He completed his PhD in epidemiology with a thesis focusing on the intersection of diabetes and heart. He went to Duke University to complete a cardiovascular research fellowship. Following this, he went to Stanford University and completed an advanced heart failure and cardiac transplantation fellowship. He is a Fonds de Research Sante Quebec (FRSQ) Junior-1 Scholar and has research funded by CIHR. Dr. Sharma’s research focuses on the use of digital technologies and artificial intelligence to optimizing therapies in people with diabetes and cardiovascular disease.
Dr. Alexandra King is a member of Nipissing First Nation (Ontario). She is the Cameco Chair in Indigenous Health and Wellness at the University of Saskatchewan (USask), co-lead of Pewaseskwan (the Indigenous Wellness Research Group) and an Internist with the Saskatchewan Health Authority. She supports Indigenous communities in improving health and wellness outcomes, bringing leadership in culturally safe and responsive research and care.
Alexandra serves on many initiatives including the Canadian Association for HIV Research, the Canadian Network on Hepatitis C, the CIHR Institute of Circulatory and Respiratory Health Advisory Board and Mitewekan (Cree, meaning ‘the spirit behind the heartbeat’), which is the lead Indigenous partner of the Cardiovascular Network of Canada, the Canadian Heart Function Alliance and the Brain-Heart Interconnectome.
At USask College of Medicine she is a Sex and Gender Champion and she supported the establishment of the Department of Indigenous Health and Wellness.
Alexandra supervises graduate students at Simon Fraser University and USask, focusing on research with Indigenous people in areas including sexually transmitted and blood-borne infections, land-based healing, health determinants and justice health.
Anne Simard (she/her) is the Director of Research for the Ted Rogers Centre for Heart Research (TRCHR) at University Health Network. She also directs TRANSFORM HF, an institutional strategic initiative between TRCHR and the University of Toronto. She leads research, training and clinical initiatives dedicated to digital health innovation, health equity and engagement of people with lived experience of heart failure. Trained in journalism and public health at Carleton University (B Jour) and University of Toronto (MHSc), she has served in leadership roles in health care for the last two decades, including Chief Mission and Research at the Heart & Stroke Foundation of Canada and Chief, Knowledge Services at Public Health Ontario. Anne is also the daughter of a parent living with heart failure.
Ashley Secundiak is from Treaty 4 territory but now calls Saskatoon and Treaty 6 territory home. She is a Project Coordinator with Pewaseskwan (the Indigenous Wellness Research Group) in the College of Medicine at the University of Saskatchewan. She has a strong interest in patient-focused and community-based participatory research and methodologies within key populations such as Indigenous communities and areas such as heart function, neuromuscular disorders, HIV, hepatitis C and other sexually transmitted and blood-borne infections.
Dr. Davina Banner is a Professor at the University of Northern British Columbia and resides on the ancestral and unceded territory of the Lheidli T’enneh. Davina leads an interdisciplinary program of research that is focused on cardiovascular and rural health, along with research that advances the science and practice of integrated knowledge translation and patient-oriented research. Through her research, Davina seeks to improve the health of Canadians living with complex health conditions, along with studying methods and practices that support meaningful co-production in research. Dr. Banner has worked with populations that face barriers to engagement in research, actively adopting equity principles and practices.
Having a stroke and heart disease has not defined Jennifer Monaghan, but rather given her the experience and passion to become an active volunteer and advocate. A lawyer by training, she is engaged in many national, provincial and local initiatives. With TRANSFORM HF/HeartLife, she currently a Co-Chair of the Masterclass on Patient Partner Engagement in Cardiovascular Research. With the Canadian Women’s Heart Health Alliance, she is a Co-Chair as well as being on the Planning Committee of the Women’s Heart Health Summit 2023, Wear Red Canada Committee and speaker at several events. She is a member of the Executive Committee of StrokeCog Recovery Trials, the world’s first clinical trial platform dedicated exclusively to stroke recovery. With the Heart & Stroke Foundation she currently is a member of the BC Rehab and Reintegration Strategy, a Co-Facilitator on “Living with Stroke” and a member of the Community Consultation and Review Panel for the Canadian Stroke Best Practice Recommendations. In September 2023, she was selected by the Global Heart Hub in conjunction with SDA Bocconi School of Management, to attend a three-day, in-person training program on Advocacy & Communications for Patient Organisations and Patient Advocates in Rome, Italy.
She received the inaugural Nieboer Lecturer Award from the Heart & Stroke Foundation, in collaboration with the Canadian Neurovascular Consortium and the Canadian Partnership for Stroke Recovery in 2021. She served on the Heart & Stroke Foundation’s Mission Council on Vascular Cognitive Impairment, the British Heart Foundation’s “Big Beat Challenge” research award in London, UK and numerous other volunteer endeavors. She was only 43 when, without any risk factors, her stroke and ultimate discovery of cardiomyopathy happened, so she feels particularly invested in supporting health care and research on the heart and brain.
Dr. Jillianne Code is a Canadian researcher, educator, and learning scientist specializing in learner agency, online learning technologies, and the impact of social media on student success and well-being. As the Director of the ALIVE Research Lab at the University of British Columbia, Dr. Code studies agency ‘unbundled’ from formal education, including video games, virtual reality, and social media communities. Her most recent work is considering learner agency and power as it relates to algorithms and digital futures in education.
However, Dr. Code’s most important role is that of a heart failure survivor and two-time heart transplant recipient. Following her heart transplants, to honour the efforts of her medical team and the sacrifice of her donors, Dr. Code has worked to advocate for the inclusion of patients as partners in healthcare practice and research. In 2016, Dr. Code co-founded the HeartLife Foundation with Marc Bains, Canada’s first – and only – national patient-led heart failure organization that has grown to include a network of heart failure patients across Canada. In 2022, HeartLife was awarded Effective Voice of the Year by the World Heart Federation for the Heart Failure Patient and Family Caregiver Charter, which has since been translated into 17 languages by the Global Heart Hub and endorsed by more than 30 patient organizations worldwide. In 2020, the feature documentary My Broken Heart, about Dr. Code’s life, was recognized with an Honourable Mention at the Santa Monica International Film Festival and is available to screen here.
Kehinde is a Ghanaian-Canadian physician who was born and raised in Nigeria. He holds a Master of Public Health from Simon Fraser University and starting a Doctor of Public Health program at the University of Toronto this fall. His training, combined with five years of clinical experience before moving to Canada, makes him well grounded in the biomedical, clinical, socio-political, and economic aspects of health. Kehinde’s areas of research interests broadly include community based-participatory research etuaptmumk (Two-eyed Seeing) methodologies and health inequities involving key populations such as Indigenous communities, African, Caribbean and Black (ACB) populations, and new Canadians. In his role as a Research Manager with Pewaseskwan, Kehinde works with multiple teams, including community researchers, providing oversight and management for research and project activities involving brain and heart health, STBBIs and Kennedy’s disease, among others. He enjoys spending time with his family and watching sports.
Dr. Malcolm King, a member of the Mississaugas of the Credit First Nation, is co-lead of Pewaseskwan (the Indigenous Wellness Research Group) and faculty in the Department of Community Health and Epidemiology at the University of Saskatchewan (USask) where he serves as the Scientific Director of the Saskatchewan Centre for Patient-Oriented Research (SCPOR).
Dr. King’s research is aimed at improving wellness and achieving health equity for First Nations, Métis and Inuit through strengths-based approaches that respect self-determination and privilege Indigenous ways of knowing.
He was originally trained as a chemist and then as a biomedical researcher. Malcolm developed new approaches to treat mucus clearance dysfunction in chronic lung disease, and continues to work on addressing issues in airborne disease transmission. After appointments at McGill University, the University of Alberta and Simon Fraser University, he joined USask in 2017. He is co-visionary of Mitewekan (Cree, meaning ‘the spirit behind the heartbeat’), which is the lead Indigenous partner of the Cardiovascular Network of Canada, the Canadian Heart Function Alliance and the Brain-Heart Interconnectome.
Marc Bains is a heart transplant recipient diagnosed with heart failure at the age of 23 He has a background in business and strategy and holds a BBA in Entrepreneurial Leadership. Since diagnosis, he has been actively engaged in the heart failure community, advocating for the patient’s voice in healthcare decision-making. Marc is the Co-Lead of the Canadian Heart Function Alliance and Co-Founder of the HeartLife Foundation of Canada, the country’s first patient-led heart failure organization, with the aim of raising awareness, providing education and support, and advocating for better care for all individuals affected by heart failure. For more information, visit http://heartlife.ca.
Sudi Barre is a social worker, entrepreneur, and a mother. Having survived 7 heart attacks, two strokes, and Spontaneous Coronary Artery Dissection, Sudi has dedicated herself to being an advocate for women heart and brain health, with emphasis on pre and postnatal health. She is particularly interested in equity-oriented health care, and is committed to working toward greater patient-partnered care.