Pan-Canadian Patient Advisory Council
The purpose of the Pan-Canadian Patient Advisory Council is to improve the health care system by providing advice and support to the PIHCIN Leadership Council (NLC), and the Coordinating Office (NCO), from the perspective of patient partners, with a focus on communication, knowledge translation and full participation. The Council seeks to fulfill this purpose by fulfilling the achievement of the following goals:
- Advocate for and increase the diversity and impact of patient voices in research;
- Advise the PIHCIN on strategic decisions;
- Determine priorities for development of the PC as well as primary health care priorities
- Advocate for and determine patient partner representation at events, committees and initiatives;
- Participate on NCO ongoing and ad hoc working groups including sustainability, communications, priority setting and evaluation;
- Ensure patient partner representation on the LC (4 members) with the purpose of providing advice and acting as a communication link;
- Connect with provincial/territorial PIHCI networks, other SPOR networks and SPOR Support Units as needed; and
- Model positive relationships and connections between patients, researchers, clinicians, knowledge users and decision-makers.
I bring lived experience as both a patient and as the caretaker for my large extended family to my role as a Patient Partner. In my tenure within the Saskatchewan Health Authority as a member of the Patient Family Leadership Council, the Accreditation Oversight Committee, the Health Networks Advisory Committee and as a member of the Area Physicians Advisory Committee. I am also a Patient Partner with 3sHealth, SCPOR (Saskatchewan Centre for Patient Oriented Research), Health Quality Council, and with Saskatchewan Health Research Council.
Nationally, I am a Patient Partner with Accreditation Canada and a Technical Team member with Health Standards Organization. I am also a Patient Partner with HealthCareCAN. April 2020 I was a co-author of a chapter in the LEADS textbook BRINGING LEADERSHIP TO LIFE IN HEALTH: LEADS IN A CARING ENVIRONMENT which focused on patient engagement. In 2019 I joined the Primary Integrated Health Care Innovations pan Canadian Patient Advisory Council.
My interest areas include Primary Care, Patient Engagement, Strategic Patient Oriented Research, Health Network, Integrated Care, Shared Governance and Leadership. My healthcare matters to me and I bring vision, voice, and passion to all that I do in my role as a Patient Partner. I care about humanity and compassion in healthcare.
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 Prince Edward Island patient partner and a participant on the Engagement Task Force. I am long- time advocate for older adults, and a lifelong learner committed to evidence-based decision making. As a life-long learner I obtained my PhD in Education in 2018 at the age of 81. I am a primary care patient and receive care for type two diabetes, osteo-arthritis, and osteoporosis.
Professionally I work part-time as a researcher and I co-chair the PEI Government Seniors Health and Wellness Implementation Council. I currently serve on the Board of Community Legal Information – PEI, Atlantic Canada Older Adult Representative for Age-Well, and Canadian older adult representative an Intergenerational Age-Friendly Living Eco-system Team. I have also been a lead author in two recent publications and have submitted a chapter in a new book on aging which is currently in progress. I have received several recognitions for my work with older adults and lifelong learning including: 2019 CBC Documentary Never to Old, 2017 Invited, Keynote Speaker at the “Engagement and Innovation 2017 Spring Symposium on Aging Research”, Network for Aging Research University of Waterloo Topic: Photovoice: Capturing the Voices of Rural Dwelling Women Age 85 and Older, 2013 Queen Elizabeth II Diamond Jubilee Medal Nominated by Canada’s Minister of State for Seniors’, 2000 Doctor of Laws, honoris causa, University of Prince Edward Island.. I have been informed that I will be receiving the Order of PEI in September 2020. I have been involved in a number of research projects as decision-maker and Co-PI in one study.
Kent Cadogan Loftsgard
I contribute my lifelong experience of cerebral palsy and asthma, my endless efforts as a patient advocate and caregiver, and my diverse professional expertise in health media production, health specialty journalism, interdisciplinary health care education, and health research to complement the Network’s collaborative efforts to improve the quality and availability of primary care.
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.