Pan-Canadian Patient Council
With aging comes the need for primary care to manage all my chronic conditions. When you live in a small rural isolated community, access to primary care has many challenges and this is how I became interested in patient-oriented research in primary care.
Currently as the co-chair of the CPCRN Patient Council positions I have held positions which include co-principal applicant on the CIHR funded grant for the CPCRN, member of both the Executive Committee and the Steering Committee. I have been involved as a co-applicant, knowledge user, and co-investigator on funded POR research since 2017. I have participated in reviewing grant abstracts, developing training curriculum, measurement tools, and in knowledge translation activities where I have collaborated on the design, delivery, and evaluation of these projects. Nationally I am collaborating on three CIHR funded grants and in Saskatchewan I am collaborating on two CIHR funded grants as well as two SHRF grants.
With lived experience as both a patient and a researcher I focus my research on bringing connection, community, and relational equity to impact evidence based best practices within the health care system. For me this means building trusting relationships amongst the health care system, health care providers, recipients of care, health partner organizations, academia and with researchers. I am also a strong advocate for equity, diversity, and inclusion particularly for including the voice and visibility of our underserved vulnerable populations.
I am a Professional Engineer registered with Engineers Geoscientists Manitoba. I have a keen interest in technology and how it can be used to improve people’s lives. I am currently developing a collaborative health platform to help care for teams and their patients and better manage patients’ health conditions, especially for patients living with chronic conditions at home. In 2014, I had a stillbirth at 33 weeks into pregnancy and soon after found myself hospitalized multiple times before I demanded a diagnosis. I was diagnosed with postpartum preeclampsia. The experience during my recovery made me realize the lack of communication and disconnect between the patients at home and the care providers. I obtained both my Master’s degree and Bachelor’s degree in Computer Engineering at the University of Manitoba. I am a member of the Patient Engagement Collaborative Group, a group in the Manitoba SPOR Support Unit at the George and Fay Yee Centre for Healthcare Innovation. I am also a member of the Executive Council as the Patient/Public Advisor. I am involved in the community volunteering for the Immigrant and Refugee Community Organization of Manitoba Inc (IRCOM).
I am a Metis woman and a direct descendant of First Nations people. I am passionate about people and their health and wellbeing; as well as protection of the environment. I am also a mother of four adult children and a number of grand-children – biological and adopted. I work as a janitor at a retirement home and enjoy the knowledge and stories shared by the grandmothers and grandfathers. I enjoy gardening, music, dancing and billiards. I have been working with the Department of Academic Family Medicine at the University of Saskatchewan for the past 25 years helping to build health programs with communities. I look forward to many more life-changing opportunities.
Katie Upham (she/her)
I live in Miꞌkmaꞌki (colonially known as Nova Scotia) and am the Harm Reduction Educator of the Substance User Network of the Atlantic Region (SUNAR). I am a member of a number of advocacy and drug user groups such as The Canadian Association of People Who Use Drugs and Moms Stop the Harm. I use my own lived experience with substance use and those of the SUNAR membership to advocate for change in health care settings, drug policies, and other structural changes to our current systems that support the rights of those with lived/living experience of substance use. I strongly believe that people who use(d) substances must be justly included in all practices, programming and guidelines that concern them to reduce stigma and save lives.
Kent Cadogan Loftsgard
Early-childhood treatment for congenital cerebral palsy and pediatric asthma taught Kent more by demonstration than by declaration about the positive principles of patient-centered practice that then inspired him to put healthcare at the center of much of his professional life. Trained in paramedicine as a teenager, and later in health specialty broadcast/print journalism, communications production, and publishing, Kent was initially recruited into the forces that founded the BC SUPPORT Unit in the summer of 2016, and he has been engaged by CIHR and SPOR in multiple capacities ever since. As an interdisciplinary clinical educator at both the health authority and university levels for over 10 years, Kent has partnered with collaborators to co-produce both biomedical/pharmaceutical intervention studies and clinical experience-focused applications of patient-oriented research since back when SPOR went by many other names. Maximizing cooperation and minimizing competition are keys to success in the conduct and implementation of cross-stakeholder research that informs integrated care to optimize patient outcomes.
After I retired, I started to pursue my interest as a patient experience partner at North York General Hospital in Toronto. I am a Professional Engineer with expertise and leadership roles in regulatory affairs in Canada and the US. I am also a patient, a caregiver and a family member of patients; several family members work in the health care sector. I bring my lived experiences and those of my loved ones to promote better care and better health by incorporating patient’s voices in health research.
I feel very strongly that Primary Care is a core aspect of overall health care and that research by and for our communities is important to support sustainable and equitable improvements. We need the voice of the patient right from the beginning, on what research projects are being developed, and how they are carried out. This will only lead to better outcomes.
I am very pleased to be given this opportunity to become a member of the Pan-Canadian Patient Advisory Council and be able to support important primary care research that benefits all Canadians.
I am a physiotherapist who has had the privilege of living and working in the small rural community of Norris Point on the beautiful west coast of Newfoundland since 1988. I initially worked in the former Bonne Bay Cottage Hospital which offered high quality patient-centered, community-based care. I worked for the regional health authority for a few years, but moved back into a community-based practice where I felt that I could better meet the needs of my patients. Cottage Hospital Physiotherapy and Fitness is located in the in the “old cottage hospital” which now operates as a social enterprise, housing a cluster of businesses which provide services to the community. I have a strong background in community economic development through my involvement with a variety of local and regional economic development boards. I believe that community-based research and social enterprise are critical elements in rural vitality and sustainability.
I have been involved in many professional associations both provincially and nationally and am currently a member of the NLSUPPORT Patient Advisory Council. I am very proud to be a member of the Pan Canadian Patient Council. I believe that Patient Centered Research can help to address some of the complex issues facing our health care system today and into the future. My vision is for CIHR funding to be available for Patient-Initiated Community-Based research projects supported by strong partnerships with academic institutions and clinicians.
Shaneel’s passion for patient-oriented research came from the challenges his late-wife experienced after the diagnosis of Stage-4 lung cancer. Shaneel realized there were limited digital tools to consolidate and make sense of the scattered and piece-mealed information they were given during the four-year journey. Shaneel knew he needed to create something to help alleviate the difficulty, confusion, and frustration they faced navigating the healthcare system. From his journey, Shaneel started Zamplo, a digital health company. Zamplo is a mission-driven social enterprise that empowers people with the resources, knowledge, and tools they need to mobilize their own personalized health data, connect meaningfully with the wisdom of the global health community, and spend less time on health care and more time living their best possible lives. Shaneel shares his knowledge of the power of health data and a strong belief in patient engagement in research. He co-authored the Declaration of Personal Health Data Rights in Canada and his abstract on the power of crowdsourcing and data mining the internet. Shaneel has a degree in Computer Engineering and a Master’s in Political Economy. He has worked overseas as a Management Consultant in England and Australia, volunteered for the World Wildlife Fund in the rainforest of Papua New Guinea. He is an avid traveller, pilot and loves the great outdoors. Shaneel and his schnoodle, Zoey, live in Calgary, Alberta.
I have a large spectrum of experiential knowledge of living with a sickness. Being born with Cystic Fibrosis more than 40 years ago, I navigated my whole life through the Quebec heath care system where I received extensive and specialized care. In 2014, I was the privileged recipient of a double lung transplant. Since 2014, I became a patient partner with the Quebec SPOR SUPPORT unit and different research teams as well as a patient trainer with the Université de Montréal. I was also Quebec’s Provincial Director of the Canadian Transplant Association and I am currently a patient co-lead for the QC PIHCI Network.
I have been a patient since birth. Over the years, I have acquired a unique level of experiential knowledge: two orphan diseases, three major cancers, chronic pain, heart problems and several months in a coma. I have been a peer-support worker for 50 years (end-of-life care, cancer, community care). I am a patient partner in community care at Family Medicine Group Notre-Dame. I am also involved in daily accompaniment of patients during COVID-19 pandemic. I accompanied a loved one with Alzheimer’s and Parkinson’s disease (5 years) and am also a mother and caregiver of my daughter Natacha, who died at the age of 20.
I am a research chair in patient and public partnership/associated patient partner of Canada. This has given me the opportunity to get involved in many ways: as a co-lead for Caring Community, a collaborator for Compassionate Communities, a patient collaborator for Réseau-1 Québec, a patient council member for the PIHCI SPOR Network, a collaborator for the Montreal Heart Institute, and as a collaborator for the Patient-Centered Outcomes Research Institute. I am is also a patient coach for the second-year students of the faculty of medicine of the Université de Montréal (clinical interview course and clinical ethics course). I am also involved as a patient recruiter for the Centre of Excellence on Partnership with Patients and the Public (CEPPP). I was a patient collaborator for the Quebec Ministry of Health COVID-19 Working Groups (triage, level of care, seniors’ care), a founder of Association des Ami(e)s du patient, and a collaborator in the Interdisciplinary Support Group and Physician Assisted Dying Governance Committee at the CHUM.
I have a master’s degree in clinical ethics, and has completed training in patient partnership, Alzheimer’s Disease and Dementia, and in end-of-life care and training for caregivers and peer support workers. I was awarded the Seniors Tribute Award by the Quebec government in 2019 and the Palliative Care Volunteer Award by the CHUM in 2009.