2018/19
Patient Impact Report
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Our Network
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Patient Advisory Committee (PAC)
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Patient Engagement
Message from the Chair
Introduction Governance Operational Research
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In The Community
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Pan-Canadian Research
Advancing Heart Rhythm Health A partnership in research discovery,
Cardiac Arrhythmia Network of Canada (CANet)
innovation, and patient engagement
Community Engagement Expert Knowledge Exchange Annual Public Forum Annual Scientific Conference
Mapping the Arrhythmia Patient Journey Q&A with Tamara Williamson Identifying the Needs of Inherited Arrhythmia Patients Vicki Pynn’s Story Q&A with Karen Gibbs
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Partnerships
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Continuum of Patient Engagement
Trevor’s Story Darrin Bauer, Sylvain Bédard, Alison Hedland, and Hugh Winsor Uniting Goals Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation
Investments Patient Participation
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Our Network Cardiac Arrhythmia Network of Canada (CANet) Vision CANet is a Pan-Canadian multidisciplinary and multi-sectoral research and development network of investigators, well-positioned industry partners, patients, caregivers, and healthcare providers focused on arrhythmia research, technology development and commercialization, and digital transformation activities. Millions of Canadians experience irregular heart rhythms, known as arrhythmias. Arrhythmias can cause sudden cardiac death, which kills 40,000 Canadians a year. Arrhythmias are projected to be the leading cause of morbidity and mortality in the world by 2020. CANet harnesses the talents of the best arrhythmia researchers, engineers and social scientists across Canada with the goal of making discoveries and transforming them into products, services, and improved processes to achieve both national and global impact. Together, we are working towards the future, shaped by a clear vision: a transformed Canadian arrhythmia care ecosystem focused on the individual needs of each patient. Our connections with fully-engaged patient partners is integral to CANet’s success.
Access for all Canadians to early detection, effective prevention, efficient and timely treatment of arrhythmia and related conditions, through a transformed, patientdriven care model.
Mission To use our internationally recognized research groups to assemble key stakeholders, work with patients and other end-users to strike key priorities, generate new knowledge about the roles of novel technology to identify patients at risk of arrhythmia, and work as a cohesive team to develop, implement, and evaluate new technologies and health strategies.
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Patient Advisory Committee (PAC) Message From the Chair Welcome to the inaugural CANet Patient Impact Report. This report is intended to provide an overview of the role of patient partners within research and provide an understanding of the importance of their perspective. The demand for the patient perspective to be woven within health research has never been greater. On-going consultation with patients results in a better understanding of their journey and provides a holistic arrhythmia care approach. I would like to extend a sincere thank you to our patient partners, as your continual support helps our Network advance arrhythmia care nationally. Our leading and renowned researchers are committed to developing innovative solutions to arrhythmia care in Canada. You, our patients, help guide, and are at the heart of our developments, impacts and success. Our Patient Advisory Committee (PAC) is an essential part of the review criteria, and the efforts of this committee act as best practices for patient engagement initiatives and have helped re-design healthcare procedures across the country. I congratulate CANet for its networks collective achievements and integrative patient perspective practices.
Mary Runte, Chair, Patient Advisory Committee (PAC)
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Patient Engagement
Introduction With valuable first-hand experience, patients, caregivers, and healthcare providers are essential to resolving unmet needs. For our success, the patient voice is central to the development and support of world-class, patient-focused solutions that will ultimately save lives, improve the patient healthcare journey and their quality of life.
“Patient involvement at CANet is authentic at all levels of the organization – from governance to operations to actual field and on the ground research.” – Mary Runte, Chair Patient Advisory Committee (PAC)
From consultation through to involvement and partnership, our Network empowers patients to manage their health and have a voice in their care. CANet also works with caregivers to improve patient care at the bedside and in the community, by providing the tools essential to give timely, effective and efficient services. Propelling the transformation of the patient-driven care model for arrhythmia and related conditions is the involvement of patients in all three key areas of our Network: Governance, Operational and Research. The unique insight provided by patients and caregivers with lived experience at all levels of the organization is critical to finding innovative solutions to reduce premature death and suffering caused by arrhythmias.
To protect the privacy of our patients and partners, the names and some personal identifying details have been changed, but the information and experiences have been presented accurately.
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Governance Patients are the consumers of healthcare, and can fully understand the breadth of needs that research and care must provide. Integrating patients into the Governance and Management of the Network is a critical component of CANet’s system of patient accountability. Our Board of Directors and all committees, include at least one patient partner. Activities include the review and approval of grant funding and monitoring the progress of CANet-funded research projects.
Patients bring a very different point of view. Researchers are good at putting themselves in the patient’s shoes but it is never the same as when you have lived it and continue to live it – it is impossible to imagine what it is like.” – François Labonté, Chair CANet Board of Directors
François Labonté Diagnosed with atrial fibrillation over ten years ago, François Labonté continues to learn more about arrhythmias every day. CANet’s organizational strength includes a diverse range of professionals actively contributing in its governance. François brings substantial experience both as a business consultant and as a Canadian Chartered Professional Accountant. François was initially encouraged to get involved with CANet because of his professional achievements and unique understanding as a patient living with atrial fibrillation. His valuable insight encouraged other committees and teams to participate. Due to his robust business experience and his substantial knowledge of the organization, he was asked to join the Board of Directors. He now holds a vital role as the organizations’ Board Chair. By heading the governing structure of the Network, he helps ensure that CANet remains accountable to the communities and patients they serve François recognizes the value of CANet workshops, events, and other collaborative engagements. These initiatives feature
knowledgeable guest speakers, patient stories and provide a forum to discuss the future of cardiac arrhythmia research. In addition, these engagements enable patients and caregivers to share their experiences and encourage further network activities. For François, the most memorable and rewarding part of his experience with CANet so far, is meeting other patient partners and the opportunity to connect with others who have had similar trials and triumphs. With their inherent compassion and motivation, CANet provides its cardiac arrhythmia researchers, and medical professionals, and partners with an essential forum to gain insight into aspects of care that only patients offer. Our communities, governing bodies and various functions enable patients to share their cardiac arrhythmia lived experiences, their treatments and the impacts affecting their daily life with our group of researchers and other medical professionals to ensure that everyone is working toward a common goal.
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Operational CANet’s Patient Advisory Committee (PAC) welcomes and amplifies the voices of patients and caregivers. Members of the PAC have helped develop training modules that explore patient engagement and partnership training for allied health professionals and highly qualified personnel (trainees).
Over the course of the past three years I’ve seen the research community embrace the importance of the patient experience in guiding the research agenda and including patients as key members of their leadership teams.” – Mary Runte, Chair CANet Patient Advisory Committee (PAC)
“The work CANet is doing will make a demonstrable difference in the communities you live in across Canada and potentially worldwide.” – Stephen Blais CANet Patient Advisory Committee (PAC)
Stephen Blais City counsellor and active member of his community, 32-year old father, Stephen Blais, was hitting the gym early in a new year. Suddenly, he lurched over, and his heart stopped. Within 90 seconds, he was receiving the life-saving critical care he needed. Stephen was lucky. A gym employee trained in cardiopulmonary resuscitation (CPR) was able to start chest compressions right away. By chance, there were three emergency responders nearby, and they immediately came to his aid—ultimately saving his life. After transport to the hospital, emergency staff attempted to restart his heart. Needing to relearn how to walk and to receive physiotherapy to help his body recover from the trauma of the experience, he was transferred to a rehabilitation care centre for six weeks. Subsequently, he received an implantable cardioverter-defibrillator (ICD) to monitor his heart continually and to deliver a shock therapy when needed. Five-years later, Stephen is active again, but he has to take a series of daily medications and bears the weight of his ordeal. His routine now includes visits with a cardiologist and trips to a defibrillator clinic a few times a year to manage his condition.
“The care I received was extraordinary, but the doctors need to find a way to communicate in a language and format that is understood by someone who hasn’t gone to school for 20 years and lay it out very clearly,” says Stephen. With a longing interest in improving his community, after his cardiac event, his enthusiasm for change took a new direction. “The evolution of the policies around Automated External Defibrillators (AED), need to evolve for the specifics of private and public scenarios,” says Stephen. Fortunate for his life saved by an easily accessible AED, Stephen is passionate about increasing public access to AEDs. He has been able to make changes in his home city of Ottawa, by implementing policy, annual inspections, product recalls, increasing AED numbers and implementing training in their use. Through his work with CANet, he hopes to institute a new means of investigation into cardiac arrhythmia research. He proposes that with preservation of patient anonymity, hospital patient data should be shared with authorized researchers so that the bank of information is as large as possible. 08
Research
Hugh Winsor
Patients help direct the research for the Network and for all funded projects. Patients are part of the scientific review with their own scoring matrix created by the patients. All projects have at least one patient partner who works collaboratively with the research team to develop protocols and milestones, and assist in the facilitation and engagement of other patients in the research initiative.
I gave feedback on how to wear the machine and also on how to refine the questionnaire which was incorporated into the study. As a result of this study, I found out what was going on with me and I got the appropriate treatment and I feel much better. This study will help patients get a better quality of life.”
Hugh Winsor is a patient. He is an integral part of the evaluation of research proposals and the monitoring of funded research projects across the Network. His role on the International Expert Advisory Committee (IEAC) and Research Management Committee (RMC), is to examine funding applications and highlight areas for patient involvement or concern. The perspectives of both the scientist and the patient are used to assess the quality of a research project for CANet-funding. As a patient partner, Hugh feels the significance of his unique input in determining which projects should receive funding, “perhaps the most significant result of all the brainstorming and discussions with the CANet teams was the creation of a dual threshold for approval,” says Hugh. “For an application to move forward, it must receive both a minimum scientific and patient grid score, so that its final ranking reflects both scientific and patient feedbacks of merits and concerns.”
had a direct hand in developing a patient criteria grid. This grid allows patients to assess research projects ensuring they address patient needs, research goals and/ or improved quality of life. In addition, the patient evaluation is to ensure the research program is inline with CANet’s goals and objectives of advancing patient-driven care. The grid established a minimum cut-off level of patient involvement. This minimum score was used hand-in-hand with the scientists’ criteria grid when assessing applications. With this process in place to ensure the patient-centredness of initiatives, incorporating patients’ views has become an integral component of CANet’s research evaluation process. For patient partners like Hugh, being involved and working to address unmet gaps in patient care is very rewarding.
He was not only responsible for providing meaningful insight into the process but
– Jacinthe Bisson
CANet Patient Co-Lead
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In The Community
Expert Knowledge Exchange
89% Community Engagement Including the CANet Annual Scientific Conference and Public Forum, throughout the year, our Network actively identifies and offers various opportunities for patients, caregivers, healthcare providers, investigators, industry, government, and other partners to come together. Our events provide opportunities to network, collaborate and discuss ways to improve care throughout the country—strengthening the quality of arrhythmia care practices impacting patient care as a whole.
of attendees found it helpful and were satisfied with the event
Annual Public Forum
86%
of attendees gained a better understanding of patient and caregiver involvement in CANet projects
motivated to learn more about patient 80% are and caregiver involvement in projects
Annual Scientific Conference felt it was relevant to them 95% ofandattendees were satisfied with the conference
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Expert Knowledge Exchange In 2018, CANet held its first Expert Knowledge Exchange (EKE) which brought groups working with patients at various points of research and policy implementation to share common discussion points around remuneration and how to demonstration impact through evaluation. Along with our partners, Cancer Care Ontario (CCO), Candian Foundation for Healthcare Improvement (CFHI), Hearts in Rhythm Organization (HiRO), and The Change Foundation, the day was filled with informative presentations, great discussions and valued interaction from our diverse group of partner and patient attendees.
“Learning about the Change Foundation, participating in HIRO, and that the CCO survey brought a new understanding of patient concerns. CANet continues its series of EKE sessions, hosting two additional events in 2018, including EKE: LEAP (Learn, Engage, Advance with Patients). EKE events emphasize a strong focus on the support of our patient partners.
“I really enjoyed the Expert Knowledge Exchange. It was great hearing personal experiences within the healthcare system.”
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Annual Public Forum Hosted by Adrian Harewood (CBC News, Ottawa), our 2018 Public Forum featured a very impactful armchair discussion which included panelists Emile Therien and Stephen Blais describing how arrhythmia has personally touched their lives.
“It was wonderful to see health-care workers and their patients coming together to ultimately improve the arrhythmia world.” New this year, the forum was live-streamed allowing online viewing and participation.
“I found the psychological impact most interesting. It was very helpful and I would enjoy exploring this further.” Members of the community joined us on-site for an interactive session which was a significant lead into the following activities of our Annual Scientific Conference.
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Annual Scientific Conferece André Picard, the award-winning national-health writer for the Globe & Mail, was the opening keynote speaker of the 2018 CANet Annual Scientific Conference and provided a compelling perspective on Canadian healthcare. Our panel discussion informed attendees of unmet challenges of cardiac implantable electrical devices. Conference host, Dr. Calum Redpath (Cardiologist, University of Ottawa Heart Institute) was joined by patients partners to provide a demonstration of VIRTUES displaying the interaction between mobile devices and the cloudbased system.
“Great to see the importance of patient voices in how remote monitoring of implantable cardioverter defibrillators are handled.” Dr. Phillip Cuculich (Cardiologist, Washington University) captured the attention of the audience with his in-depth presentation on arrhythmia-related innovation. Phillip presented some of the research and findings he developed collaboratively with radiation oncologists that resulted in a noninvasive method to map and treat heart rhythm disorders using technology typically used for treating certain forms of cancer. The highlight of Phillips’ presentation included a video of a patient who was able to leave the hospital shortly after an hour-long procedure which would typically take a full day before discharge.
“This was the best [CANet event] I’ve attended. It was excellent! I attended as a patient and I am also a nurse.”
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Pan-Canadian research
National Research Mapping the Arrhythmia Patient Journey Patient focus groups, narrative interviews, in-depth interviews, and surveys solicit the patient view of the economic, employment, social, and psychological impacts of arrhythmia. To further depict the impact of arrhythmia on the patient’s life experience, separate focus group, interview, and survey data is collected from arrhythmia patient family members. To ensure the primacy of the patient voice within the research, patients are also involved in the thematic analysis of the focus group, interview, and survey data to map the patient journey through the experience of arrhythmia. The ultimate purpose of patient journey mapping is to identify patient priorities for managing medical interventions, mitigating lifestyle challenges, and conducting further research.
It is important to patients because this extensive data collection provides a robust context for medical interventions and research which might otherwise reflect only the medical practitioners’ construction of meaning and priorities. For example, medical interventions that fail to take the realities of patient employment, family responsibilities, and lifestyle choices into consideration are less likely to achieve compliance than when these interventions can be scheduled, explained, and supported within a narrative that makes sense to the patient, family, and employer. Understanding and considering the patient perspective may lead to more efficient and effective interventions, and therefore more desirable outcomes for patients, their families, employers, and, ultimately the economy and society.
This research will provide Canada’s first in-depth and comprehensive record of received arrhythmia care through the perspective of the patients themselves. From this information, doctors will be able to design more efficient, effective and holistic interventions that will take into account patient priorities.
What motivated me to get involved with CANet was how having a patient-centred focus changes the perspective on how research projects are completed and how treatment is given.” – Dave Mercer
CANet Patient Partner
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Questions & Answers
Tamara Williamson Masters Student, CANet HQP
As a researcher working with Mapping the Arrhythmia Patient Journey, what have you learned about supporting patient engagement?
What are the top three components that support patient engagement within research?
In my work on CANet projects, I have learned that patient partners are an extremely valuable resource. I have learned to highly value and respect the knowledge our project lead (Mary Runte) provides to the research team. For example, when interviewing patients, Mary is able to ask follow-up questions that I may not have had the insight to ask, because she may have had a similar lived experience as our participants. I suspect this has and will result in a much richer, more true-to-life qualitative data set.
• Mutual respect between researchers and patient partners. The researcher must have absolute respect for the patient’s lived experience of the disease/ condition, and the patient should respect the researcher’s knowledge and expertise about the research process (methods, measures, etc).
Ultimately, I think supporting patient engagement comes down to listening and valuing what the patient has to offer throughout the research process.
• An open-minded research team and principaI investigator. The team must be willing to consider ideas and perspectives outside of their comfort zone. For example, considering assessing patient-oriented outcome variables over hard clinical outcomes if the patient’s experience dictates these are important.
What are your goals for supporting further patient engagement within the Mapping the Arrhythmia Patient Journey project? I would like to learn more about how to recruit patient partners and leads for future studies I participate in with CANet. I would also like to be involved in generating new research questions in partnership with patients (i.e., designing a study from the ground-up with our patient partners). I think this would be an amazing learning experience. Finally, I would like to participate in more knowledge translation efforts to communicate important findings back to the people they are intended to help – the patients themselves. Through presentations at public forums and patient-centred conferences (i.e. the SPOR Summer Institute here in Alberta) I would like to demonstrate to patients that their input, partnership and lived experiences are truly helping researchers make a difference in the patient journey.
• Professional guidance from knowledgeable patientengagement experts. For example, Caroline Wong, Patient Engagement and Empowerment Coordinator, was extremely helpful in educating me about the process of creating a patient-centred research program for CANet. It is advisable to have an expert assist with navigating the process when a team of investigators decides to include patient partners on the study team.
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Pan-Canadian Care
Identifying the Needs of Inherited Arrhythmia Patients With CANet’s social sciences initiatives and funding to support the examination of new approaches to research critical to the transformation of arrhythmia care practices in Canada, Hearts in Rhythm Organization (HiRO) has embarked on a pioneering nationwide journey to listen to patient experiences. HiRO’s goals are to standardize care and treatment for Canadians suffering from inherited rhythm disorders (IRD) such as inherited arrhythmia conditions and the unpredictable sudden cardiac death. Well-aligned with CANet’s patient engagement goals, HiRO’s patient advisory group is learning the basics of the clinical research process to support the development of research questions for patients.
Vicki Pynn CANet Patient Partner “Nothing leading up to that day indicated I was at risk,” says Vicki Pynn. “There is no family history. I always thought my heart was the last thing I needed to worry about.” In 2012, Vicki suffered a cardiac arrest and is grateful her husband, Douglas, was there to save her life. “If he hadn’t been there, things would have been much different. He started CPR, called the ambulance right away and they got me to Vancouver General Hospital.” After a nine-day coma and no insight into why she was experiencing arrhythmia or irregular heartbeats, Vicki had an implanted cardioverter defibrillator (ICD) surgically inserted in her chest. But, she continued to experience arrhythmia and ICD shocks. Dr. Andrew Krahn, CANet Investigator, and the HiRO team connected with Vicki and determined that quinidine, a drug to regulate her heartbeat was required. This decision changed her life. “I don’t know where I would be without them,” says Vicki, who gets emotional talking about what the HiRO team did for her. “I can’t express enough how vital Dr. Krahn and the HiRO team were to my survival. They are all heroes to me.” “HiRO is so important,” she adds. “Families going through this need somewhere to go and make sure everyone is safe. It’s peace of mind. It’s also important to raise awareness around the many types of inherited arrhythmia and to make sure everyone across the country has access to the same treatment that I did, regardless of where they live.”
What was your motivation to join the HiRO program? To give back. The entire team was so helpful to me when I needed answers. Joining the HiRO program has allowed me to learn more about my condition, and to help others as they face similar challenges.
What are the top three components that support patient engagement within research? Insight, accountability and stories. Patients bring with them their own expert experiences learned by living with their conditions. They help research be more accountable and transparent, and their stories open the possibility for the research to take on a new direction.
What are your goals for supporting further patient engagement within the HiRO program? I would love to have input into how HiRO clinics engage patients. I want to advocate for mental health support by people trained specifically in matters of the heart, for patients who need it. It’s important to take care of the psychological health of a patient as well as their physical health.
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Questions & Answers
Karen Gibbs Research Professional, CANet HQP
Karen Gibbs, National Project Manager for the Hearts in Rhythm Organization (HiRO) and Vicki Pynn, have been working together to support patient engagement across the HiRO program. As a health professional and research project manager, Gibbs illustrates the importance of involving Highly Qualified Personnel (HQP) trainees. HQP trainees are a new generation of scientists with the skills needed to optimize knowledge creation and translation in a changing world. CANet programs provide its trainees with life-long research skills necessary to be successful in the academic, commercial and health services sectors. Working together, Gibbs and Pynn can highlight key opportunities available through meaningful patient engagement.
I hope that through my work with CANet the patients and their caregivers will feel empowered and confident with new skills and insight.� – Karen Gibbs
Research Professional, CANet HQP
What are the top three components that support patient engagement within research? Commitment, trust and expertise in research and patient engagement.
As a research professional working with inherited rhythm research, what have you learned about supporting patient engagement? Supporting patient engagement in clinical research has given me new insight into the value of shared experiences. As consumers of healthcare, patients bring lived experience to the table, which enhances our ability to improve healthcare in meaningful and practical ways. Knowing what is important to them helps us provide the highest standard of care to all Canadians.
What are your goals for supporting further patient engagement within the HiRO program? To help patients and families discover their ability to make a difference in healthcare. As healthcare consumers, patients have power and can use their experiences to advocate for their needs, and the needs of others.
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PartnersHIps
CANet Patient Partner
Trevor’s Story Trevor lives with Brugada syndrome (BrS). BrS increases the risk of abnormal heart rhythms and sudden cardiac death and like many arrhythmia disorders, is complicated to diagnose. Since the age of 12, Trevor had sporadic episodes where he would faint or “fade out”, but the emergency room doctors could not provide an adequate explanation. Nearly ten years after Trevor’s initial symptoms appeared, during an Electrophysiology Studies Test, Trevor’s heart stopped, and it took three attempts to bring him back. His doctors finally had a diagnosis and were now able to offer Trevor and his family an explanation. Like many who are born with cardiac arrhythmias, Trevor underwent surgery to insert an Implantable Cardioverter Defibrillator (ICD) and was told this would save his life. ICDs can correct life-threatening arrhythmias by delivering a short jolt of electricity directly to the heart at the moment it begins to change pace. However, someone living with this life-saving device needs to have significant accommodations implemented immediately. Post-surgery, Trevor’s cardiologist briefed him and his family on these necessary changes. With the ICD in place, there was little evidence of the surgery. Returning home, concerned with being asked to raise his arms when going through airport security, which would have been painful and could damage or jostle the ICD, Trevor wore a sling to signal his space requirements.
To avoid disrupting the ICD, Trevor had to have the subwoofer removed from his car stereo. He couldn’t even be involved in the removal process as it could change the ICD’s programming. Although employed in the technology sector, he was also told to avoid computer servers which forced a change in his career path. These lifestyle changes not only impacted Trevor’s future but also affected his loved ones and those close to him.
One of the things that’s happening now in CANet is the recognition that not only are we out to save lives, but we’re out to improve the quality of life of those we save and that’s not a simple thing – it’s a journey.” – Dr. Andrew Krahn
CANet Investigator and Trevor’s physician
CANet recognizes the need to improve a patient’s quality of life and has funded multiple projects to investigate the quality of patient care and the psychological well-being of survivors. Trevor’s cardiologist and CANet investigator, Dr. Andrew Krahn looks beyond the hard science of the condition and incorporates the essential requirements of the patient, their family, and caregivers. The multi-faceted nature of living with the diagnosis is a complex story that only patients and their caregivers can truly understand. It is this understanding that is the root of CANet’s persistence in developing this network of patients, healthcare providers and researchers. The future of cardiac care in Canada will be not only patient-centred but patient led.
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CANet Patient Partner
Darrin Bauer A married father of three daughters, Darrin Bauer, is an IT professional with over 25 years of experience as a developer, business analyst, project manager, team lead and enterprise architect. Since childhood, Darrin has suffered bouts of syncope, often referred to as fainting. After becoming a patient of Dr. Robert Sheldon in the late ‘90s, he joined CANet, as well as, CASA (Canadian Autonomics and Syncope Alliance). He is involved with CANet for several reasons, but his primary motivation is to help those with syncope and to provide a patient perspective to the important initiatives and research endeavors of the Network. Darrin attributes the opportunity to meet a large number of dedicated doctors, professionals, and patients, all dedicated to helping develop better arrhythmia care in Canada to CANet.
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CANet Patient Partner
Sylvain Bédard Sylvain Bédard first heard the word “transplantation” in 1980 when he was diagnosed with Hypertrophic Cardiomyopathy (HCM), a condition his sister, at the age of 18, tragically passed away from. In 2000, three years after receiving a heart transplant, he climbed Mont-Blanc (4800m). A year later he became the first heart transplant recipient in history to climb 6500m, scaling the Sajama Mountain in Bolivia. Sylvain has spoken at several events including ones hosted by the Canadian Cardiology Society, the Canadian Association of Cardiac Rehabilitation and the International Society of Heart and Lung Transplantation. He is a patient coordinator at the Center of Excellence on Partnership with Patients associated at the Centre de Recherche de l’Universite du Montreal and a patient partner with CANet. Currently, Sylvain manages patient partner projects in many facets including transplant and donation research, arrhythmia, sudden cardiac death, atrial fibrillation, precision medicine, and artificial intelligence.
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CANet Patient Partner
Alison Headland Alison Headland is a health professional who became interested in the impact of arrhythmia on the lives of patients after experiencing her own ‘adventure in arrhythmia land’. “There are the obvious physical issues, but there isn’t as much attention paid to the mental and emotional difficulties that often occur, as arrhythmias can be a life-long challenge for some people,” she says. After working with her local arrhythmia physicians and the cardiac rehabilitation unit, her interest in the experience of the arrhythmia sufferer led to the initiation of a support group for patients with atrial fibrillation, one of the most common arrhythmias. Simultaneously, she became involved with CANet and feels the Network offers her the opportunity to work with healthcare professionals and researchers to ensure that patients are involved and supported through the research process and that their voices are always considered.
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CANet Patient Partner
Hugh Winsor A life member of the Parliamentary Press Gallery, Hugh Winsor is a semi-retired journalist living with heart rhythm disturbances. With over 40 years of experience working for noted publications such as The Globe and Mail, as an analyst of health policy, Hugh understands cardiac health and medicine both as a journalist and as a patient. It is this combination of cardiac comprehension that has led to his position in governance and management of heart health institutions. For over a decade, Hugh has been a member on the board of the University of Ottawa Heart Institute and has served on CANet’s Patient Advisory Committee (PAC), Research Management Committee (RMC) and International Expert Advisory Committee (IEAC) since 2015. As the son of a physician, he was exposed to science and medicine at a young age and initially registered in the pre-med program at Queen’s University. It was his experience as news editor of the Queen’s journal that sparked his degree change into Political Science which ultimately lead to his prolific career in journalism. As a heart patient, Hugh was fortunate to have a successful mitral valve repair and electrophysiology for the treatment of his arrhythmia.
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Uniting Goals With our mandate to advance heart rhythm health for Canadians, our Network has partnered with esteemed academic institutions across Canada, globally recognized industries, not-for-profit organizations, federal and provincial government agencies, as well as, patients, caregivers, and families. Our unique partnerships create the ideal environment for scientific and clinical advances, knowledge translation, and business opportunities. Collaborations with our partners have enabled us to achieve great successes in assembling key stakeholders, working with patients and other end-users to strike key priorities, generate new knowledge about the roles of novel technology to identify patients at risk of arrhythmia, and work as a cohesive team to develop, implement, and evaluate new technologies and health strategies.
Canadian Foundation for Healthcare Improvement Canadian Institutes of Health Research – Supporting Patient-Oriented Research Unit Canadian Partnership Against Cancer Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation Cancer Care Ontario (CCO) Centre of Excellence on Partnership with Patients and the Public (CEPPP) Health Quality Ontario Heart and Stroke Foundation Hearts in Rhythm Organization The Change Foundation
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Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation
putting a smile on Patients’ Faces Pam Husband has spent 23 tireless years giving a voice to patients and families affected by inherited rhythm disorders (IRD), which often lead to sudden cardiac death. She is the Executive Director of the Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation, Canada’s only SADS-specific patient advocacy group. The registered Canadian charity works with patients and medical professionals to raise awareness about the warning signs of SADS.
For example, current recommendations of acceptable levels of exercise for patients suffering from IRD have come about from a combination of research studies, but also, feedback that physicians have received from patients in these conferences. Many patients, Pam informs, have become role models to others like themselves, inspiring them to take charge and ownership of their health conditions. Most importantly, however, the conferences provide patients with a sense of belonging.
An estimated 700 children and young people die from a SADS condition each year in Canada – early diagnosis and proper treatment help patients lead productive lives. “CANet has been very helpful by including and inviting us to their meetings and conferences,” Pam says.
Pam lost her 16-year old son to sudden cardiac death – he was initially misdiagnosed with idiopathic epilepsy. “These inherited diseases are not just affecting one individual but whole families – so the correct diagnosis is very important,” she says.
As a patient-information group, SADS gets to talk to other physicians about the organization, and create opportunities to reach out to their patients. For years, the organization has brought patients and healthcare professionals closer through their website, social media, and importantly, their SADS conferences, held across Canada. “It is critical to bring patient voices forward, understand their experiences, and improve their healthcare experience,” Pam says.
Shortly after his death, Pam’s daughter was diagnosed with an inherited rhythm disorder. “I have strong motivation to prevent these tragedies in other families,” she says. She looks forward to making progress on that front with CANet, to achieve a 10 per cent drop in sudden cardiac death within the decade.
SADS conferences give patients an opportunity to approach and interact with doctors more proactively. Physicians, according to Pam, learn to see patients in a different light; they get to discuss patient issues in a more personal, informal way, far removed from formal clinical settings. “The conferences are beneficial for encouraging patients to be more engaged with the healthcare community, and actively invest in healthier lifestyles,” Pam says.
“We are very excited about our relationship with CANet – there are opportunities on both sides, and we are really thrilled to be included in the organization,” Pam says.
Every patient has gone through a similar experience. People here are very good at taking each other under their wings.” – Pam Husband, Executive Director
Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation
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Investment
Continuum of Patient Engagement
in integrating patients into CANet-funded research projects
Governance
Operational
Patients consulted regarding governance
Patients consulted regarding operations
Level of Engagement
$406,000
Consultation
(65%)
Integration in research and training
Research
Patients consulted regarding research
$115,000 (18.5%) Collaboration and knowledge translation
$98,000
(16.5%)
Involvement
Integration in governance
$619,000.00
total
Patient Participation
21 27 11,250 135
Patients involved in governance activities across the network
Partnership
Patients Make Recommendations Transforming Patient-Centred Care
Patients serve on board of directors and subcommitees
Patients on Research Management Committee subcommittees
Patients on research committees
Patients involved in research actitivites across 18 funded projects Patients participated in research programs Patients and caregivers have participated in 2018 events
EvaluatioN
Process Outcomes 28
Notes
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The Cardiac Arrhythmia Network of Canada (CANet) is a not-for-profit organization dedicated to transforming Canada’s arrhythmia healthcare system through integrated trans-disciplinary research and development. The network’s strategy is to invent, prove, and implement innovative solutions to enable patients to take ownership and co-manage their arrhythmia health. CANet is funded in part by the federal government’s Networks of Centres of Excellence (NCE).
465 Richmond St. 3rd Floor London, ON N6G 2M1 519-661-2111 x80011 info@canet-nce.ca canet-nce.ca