We believe that engaging patients in research is the cornerstone to building a health care system that is sustainable, accessible, inclusive, and equal for all. In 2014, the Canadian Institutes for Health Research (CIHR) launched its Strategy for Patient-Oriented Research (SPOR) Research Networks in Chronic Disease. Diabetes Action Canada is one of these networks and focuses on long-term improvements to the management and treatment of diabetes and its related complications. Engaging individuals and caregivers in our work, ensures the projects, research, tools and information Diabetes Action Canada develops is relevant to those that live with diabetes. This initiative reinforces the importance of partnering with the people whose lives are touched by chronic disease to achieve goals of finding real solutions to improve the lives of people and families who are living with these conditions.
At Diabetes Action Canada, Patient Partners are persons living with diabetes or caregivers (including family and friends) that have agreed to collaborate within the Network, bringing their lived experience with diabetes to help inform current and future research within the Network and beyond.
Click a Profile to See More Information About Our Patient Partners
Mike Alexander, an Anishinaabe artist and athlete who has struggled with depression and addiction. He is a Sixties Scoop survivor and recently became a member of Diabetes Action Canada’s Indigenous Patient Circle.
Virtue is a social worker from Toronto, who has been living with diabetes for over 22 years. She holds undergraduate and graduate degrees in social work, as well as a BFA in film and video production from York University. She has combined this background with social media to connect with others living with diabetes. She completed her graduate research and has done several presentations about diabetes, peer support, and online communities. She worked for over three years with the Canadian charitable organization, Connected in Motion, which provides experiential and peer support opportunities for adults living with Type 1 diabetes. There, she provided online and social media content, while further providing supportive counselling to individuals and groups of people dealing with Type 1 diabetes. She currently has a private practice in Toronto where she provides therapy and counselling for people going through a variety of mental health difficulties, including those related to living with a chronic illness like diabetes
Tamara and Kenya are mother and daughter from northern Manitoba Tataskweyak First Nation. Kenya was diagnosed with type 1 diabetes at age 9 in 2010. During this time Tamara says she felt alone, with no resources in the north for supports for families dealing with this illness. They decided to relocate to Winnipeg to be closer to health team, to get educated together. Tamara and Kenya’s goal is to take what they’ve learnt, to support our communities and families to share their story and experience to bring awareness in any way they can, and help educate children about diabetes.
Ron is an active advocate for dementia, caregiving, aging, and research communities. As a caregiver to his father who lived with Alzheimer’s for 10+ years to age in place at home until January 2018, Ron utilized technology, community, creative strategies and access to research to support his family’s life to live well and as best as possible. In recent years, Ron has been invited to do presentations locally and internationally for Alzheimer’s Societies, communities, police, educators, innovators and corporations. He shares his knowledge on caregiving as we age, ways to use technology for caring, and living safely with dementia, especially for those at risk of wandering and going missing. He is an active member, advisor, and mentor to numerous organizations and educational institutions such as AGE-WELL NCE, Centre for Aging and Brain Health Innovation (CABHI) at Baycrest, City of Toronto’s Seniors Strategy, SE Health (formerly known as Saint Elizabeth Health Care) and the Translational Research Program (TRP) at the University of Toronto’s Faculty of Medicine. Further in his past, Ron has a background in Computer Sciences, Space and Communication Sciences, Marine Aquaculture, Life Coaching and Culinary Arts. He was the Founder and Executive Director of a Youth Career and Employment Centre that served over 30,000 young people, immigrants and career changers in the Toronto area during its’ operation.
Denis is recently retired and has been living with type-1 diabetes for 35 years. In 2015, he had his first contact with the world of health research. First as a participant in a research project on diabetes and then as a committee member aiming at promoting and involving patients as research partners. Denis is particularly interested and passionate about all measures / ideas / projects leading to participatory and dynamic integration of patients in research. Denis is currently Chair of the Comité stratégique patient-partenaire du Centre de recherche du centre hospitalier universitaire de Sherbrooke (CRCHUS), a member of the Communauté de pratique des patients et citoyens partenaires de la recherche en santé au Québec (CPPCP-RSQ) de l’Unité de soutien SRAP du Québec, and a participant in two research projects with Diabetes Action Canada.
My name is Marie Hélène Monique Brière,I am of indigenous descent, Maliseet of Viger, Cacouna, and type 2 diabetic. I participated in a research project “Partner patient platform” which took place in 2018 with Marie-Claude Tremblay, Assistant Professor at the Faculty of Medicine of the University of Laval. This project brought together Indigenous people living with type 2 diabetes. I loved my meeting with Marie-Claude as well as the other patient partners. I discovered a world hitherto unknown to me. Following our participation in the Diabetes Action Canada conference held in Toronto in 2018, I really understood my role as a patient partner. My involvement in various research projects is limited to those that are held in French because my knowledge of the English language is minimal. I love these meetings which allow me to share my point of view and my experience of living with type 2 diabetes, and which I believe can help researchers; they see us as equal research partners with them, which is very rewarding. Many thanks to all of you for giving us the chance to work with you.
Jean-Marc has been officially retired since 2011 from the health network. In 1971, at the age of 19 years, he was diagnosed with type 1 diabetes and has lived with this reality for 50 years this year. This change in health led Jean-Marc to change his professional orientation since he was in the armed forces at the time. He resumed his full-time studies and became a specialized educator in 1975. He worked in the health network for a few years and in 1979 became involved in visual impairment rehabilitation services for a new clientele. While working full time, he continued his training in the USA by becoming a visual impairment rehabilitation worker. In 1985, he made the leap into management by obtaining a position of administrator with the teams of specialists. While working full-time, he engaged part-time in management training and obtained his bachelor’s degree from the Université de Montréal in 1995. In 2000, he obtained his 2nd Cycle diploma in Management and Development from the Université Laval.
In the 1980s Jean-Marc became involved with the Quebec local diabetes chapter as a member initially and later as President. He became a member of the provincial board of directors of the Diabetes Association and served as Vice-President for a time. The development of local sections was one of its priority objectives in order to support all people with diabetes in Quebec. Throughout these 50 years of life as a person living with diabetes, Jean-Marc has participated in various research projects with researchers from the hospital environment where he is followed in endocrinology. For the past five years, he has been a citizen representative on an ethics committee for population health research and front-line services. He is also a patient partner with Diabetes Action Canada and has been a member of the collective patient circle since the beginning and is also involved in research projects.
Jean-Marc remains active by maintaining a good rhythm of daily physical activities while aiming for the best possible control of his condition. Now it is easier with the use of the insulin pump as a new technology. For him, research is essential and, as a patient partner, we must share our knowledge and our experience among ourselves and with research teams. For Jean-Marc, living healthy with diabetes is a daily challenge that must be met continuously because he wants to live as long as possible.
Pascual worked as a community development organizer and human rights advocate in Montreal from 1970 until his retirement in 2014. He worked and volunteered with an organization that strived to improve healthcare services for members of ethno cultural communities residing in Quebec. In 2004, he was diagnosed with Type 2 diabetes but believes his condition had gone undiagnosed prior to this. He stresses the importance of interdisciplinary, holistic and culturally sensitive approaches for education, training, assessment, diagnosis and treatment of patients in the healthcare system – particularly when working with newcomers. Immigrating into a new country is often traumatic, meaning culturally sensitive care and accommodation of diversity should be a priority to reduce barriers to accessing care and treatment. He promotes the importance of self-esteem and training the mind and the spirit to harmonize with all organs of the body. He believes that faith and will power can have healing powers even with chronic conditions like diabetes.
Sasha is a wife and mother of four who is passionate about Type 1 Diabetes advocacy because of her son, Brayson (age 9), who has been living with the condition since the age of 2. She became a patient partner with Diabetes Action Canada in September 2017 and serves as a member of Diabetes Action Canada’s Collective Patient Circle, Indigenous Patient Circle, and Steering Council. She also advocates through Diabetes Canada and JDRF, as well as social media platforms, sharing her family’s Type 1 journey. She has presented at numerous conferences, including the Annual Diabetes Canada Conference in 2019, Society for Medical Decision Making Annual Symposium speaking on “Medical Decision Making Across the Lifespan”, and a Live Well with Diabetes Event. Her family plans support group meetings, parade floats to spread awareness for the Type 1 Community in her city, and other fundraising events. She hopes to help bridge the gap between the research world and lived-experience by sharing her story and first hand knowledge of the condition.
Howard is a Patient Partner for the Training and Mentoring Program and a member of the Collective Patient Circle. Howard is retired from the Canadian Military. He is from Winnipeg and has lived with T2D since 2008. He had pre-diabetes for 15 years prior to that. Since retiring, he has been involved in supporting diabetes care and research, including as a subject in two drug research projects, a Board Member of the Youville Clinic Centre of Diabetic Excellence in Manitoba, and a member of one of six Local Health Involvement Groups under the auspices of the Winnipeg Regional Health Authority. He took part in the Foundational Training Seminar in Ottawa for Patient-Oriented Research volunteers and is enthusiastically providing input for improved care for Canadians living with diabetes.
Kate Farnsworth is the patient partner co-lead for the Innovations in Type-1 Diabetes Program. Kate has been heavily involved in the Do-It-Yourself #wearenotwaiting movement since her daughter Sydney was diagnosed with type 1 diabetes at the age of 8. With a background in information technology and graphic design, Kate has lent her skillset to developing diabetes watch faces for remote monitoring used by patients worldwide. Kate has created an online patient-driven support community for people who are exploring DIY closed-loop solutions and continues to advocate for all people with diabetes to have access to the best tools to manage their diabetes.
Robert is the Aboriginal Diabetes Education Coordinator for the Ontario Native Women’s Association (ONWA). Robert is Anishnaabe from Animakee Wa Zhing No. #37 First Nation, Treaty 3 and is the Eagle Staff Keeper for ONWA’s Grandmother Eagle Staff. He graduated from Confederation College and Lakehead University with BA in both Sociology and Indigenous Learning. Robert is passionate about his work in diabetes and dedicates his work to the memory of his Grandmother. Diabetes has ravaged his family for three generations, and now the next generations are here. Robert is very involved with his community as the Chair for the Northwestern Ontario Regional Stroke Network’s Aboriginal Advisory Committee. He is a current member of the Thunder Bay Regional Health Science Centre’s Advisory Committee for Aboriginal Lead Engagement and the TBRHSC Patient/Family Advisor Council. Robert also volunteers for the Hospice Northwest Palliative Care Program and serves as an Elder for the Indigenous Peoples Court, Thunder Bay Consolidated Courthouse. Robert is a firm believer that the work he is doing will benefit his children, grandchildren, and the next generations.
André is a Patient Partner co-facilitator for the Training and Mentoring Program. André is a writer, speaker and active advocate living with T2D in Sherbrooke, QC. He is an accomplished author, with his second book, “Le diabète: Un nouveau mode de vie à découvrir” written and published in 2009 in collaboration with people living with diabetes from France and Belgium. With this book, André hopes to fill the void that arises after the announcement of the diagnosis, to help people better understand diabetes and its complications, as well as, to empower people living with diabetes to live a full and fulfilling life. You can access André’s book by clicking here.
André has also established a website in order to inform people living with diabetes about research and to support those newly diagnosed in learning about lifestyles and diabetes management. He is actively involved in a variety of patient participation and diabetes research projects, such as Liaison Officer for the board of French language SRAP (SPOR) patients, patient partner for the Centre for Diabetes, Obesity and Cardiovascular Complications of the Centre Hospitalier Universitaire de Sherbrooke, patient-partner of Réseau -1 Québec, patient partner for ComPaRe research in France on diabetes, and life coach with the Kidney League in France for people who are on dialysis. André wishes to use his experience to help guide researchers in understanding the realities of living with diabetes every day. He also hopes to contribute to improving the quality of life for all people living with diabetes
I am a semi-retired business man living on a farm north of Toronto who has lived with Type 2 diabetes for approximately 15-years. I have been involved with Gary Lewis for 13-years supporting the Banting Best Research Centre in Toronto. I wanted to support research that would make a difference in the lives of people living with this condition and Gary invited me to get involved. What keeps me involved is seeing the dedication of researchers like Gary and so many others across Canada that give their all for very little financial reward and Patient Partners who contribute meaningfully by helping researchers focus on their specific issues and needs.
I have been a Patient Partner at Diabetes Action Canada since its inception and serve on the Steering Council Executive. I also serve as Chair of the Finance-Audit Standing Committee and Co-Chair of the Strategic Planning Committee.
I am also very involved with Rotary International and have been a member of the Rotary Club of Bolton, in the hills of Caledon, for 30 years helping people locally and throughout the world. While COVID-19 has made our work more challenging, we have successfully delivered more than 20,000 medical masks to Seniors, Seniors Facilities and not-for-profit organizations and donated hundreds of $100.00 grocery gift certificates to families in need locally.
Dana Greenberg was diagnosed with Type 1 Diabetes (T1D) in 1972, at the age of 7. She was a professional fundraiser for over 20 years and is the proud mom of 3 kids, aged 28, 26 and 20. Twelve years ago, her youngest daughter Marley was also diagnosed with T1D at the age of 8. After Marley’s diagnosis, Dana quickly came to realize that she was in a unique position to help others because she understood both what it means to be a person living with T1D and what it means to be a parent of a child with T1D.
Dana is an active volunteer with many diabetes organizations in Toronto, where she chairs various committees, does speaking engagements, and has mentored dozens of families living with T1D. Dana has been involved with Diabetes Action Canada as a patient partner since 2017. Dana is a member of the Collective Patient Circle, is a patient partner on several research projects, and co-leads the project: Answering Questions that Matter to Persons Living with Diabetes Using the National Diabetes Repository.
I joined DAC in 2017 and have been a member of the Collective Patient Circle since. This organization provided me with an opportunity to get involved with and influence important research, while also offering a young person’s perspective on living with diabetes. I was diagnosed with Type 1 Diabetes when I was 7 years old, just 6 years after my oldest brother received the same diagnosis. I grew up learning that diabetes did not limit me and consequently, dedicated much of my life to competitive sports. I am a recent graduate from the University of Prince Edward Island, completing my undergraduate degree in Psychology and Biology. I hope to continue my education and pursue a career in healthcare. Ultimately, I’d like to help others, as I have been helped, to overcome obstacles in their life and achieve their goals. I am a firm believer that everyone deserves the opportunity to pursue their dreams, no matter their circumstance.
Heather is an exercise enthusiast from Calgary, who has been living with type 1 diabetes for over 30 years. She holds an undergraduate degree in Kinesiology, and recently finished her M.Sc. in Kinesiology, Sport, and Recreation from the University of Alberta. Her graduate work focused on people with type 1 diabetes and how exercise may affect their blood glucose. Heather has been involved with Diabetes Canada’s D-Camps off and on for several years, providing support for the medical team at their specific request. Her passion for movement often has her dancing, skipping, cycling, or lifting. She is currently aspiring to find her next scholastic adventure, whether it be in research or medicine.
Alex is a member of the Kanien’kehá:ka community of Kahnawake, in Quebec near Montreal. He has extensive experience working with the Kahnawake School Diabetes Prevention Project as a Diabetes Prevention Intervention Facilitator, Training Coordinator and Executive Director. He is the recipient of an Honorary Degree of Doctor of Science from Queen’s University recognized for his exemplary work with a number of national diabetes organizations including Health Canada’s Aboriginal Diabetes Initiative. He strives to integrate the traditional knowledge of the Rotinonsonni (The People of the Longhouse) into his daily life and share traditional teachings through community support mechanisms. Alex’s holds close ties to Indigenous communities and believes strongly that health promotion, community mobilization, and personal empowerment for healthy lifestyles are the key to healing multi-generational trauma. He serves as Co-Lead of the Diabetes Action Canada Program on Indigenous Peoples’ Health.
Adhiyat was diagnosed with Type 1 diabetes in 2001. She has been a patient partner with Diabetes Action Canada since 2017 and has been involved in several research projects, including as the lead patient partner for the T1ME Trial and a member of the Research Governing Committee. Aside from this, Adhiyat is a volunteer for T1International as her lived experience with type 1 diabetes has pushed her interest in advocating for insulin affordability and access to health care. She is currently a Master’s student studying global health and also serves as a patient research partner with the IMAGINE Network to advocate for patients living with diabetic gastroparesis.
Barb and Clarence are members of Pine Creek First Nation in Treaty 4 Territory are both retired from the public service and continue to be active on various Boards and committees. Barbara is on the National Board for Cultural Human Resources Council from Ottawa, serving on the Standing Indigenous Advisory Council to the Canadian Human Rights museum with Clarence. Both serve on the Peguis National Elders Gathering, DAC Diabetes Action Canada, National Climate Change Committee; both are Cultural/Spiritual Advisors for First Peoples Investment Group as well as APTN – Aboriginal Peoples Television Network. Clarence is also a member of the St. James Historical Museum and the Healthy Aboriginal Network in Vancouver. Clarence and Barbara were recognized as Wisdom Keepers by the Circle of Educators in Manitoba as well as both are recipients of the Golden Jubilee Award.
Kylie Peacock has lived with T1D for more than 20 years and has been an advocate and a supportive voice in the community, in particular in the area of diabetes and mental health. She has joined the Research Governance Committee and will be a patient representative for the National Diabetes Repository. Kylie hopes more people living with diabetes will consider becoming a patient partner in order to ensure diverse voices and experiences are represented in diabetes research. “Being a patient partner is extremely rewarding. Not only do I have the opportunity to contribute to meaningful and impactful research, but I have the opportunity to build important relationships with other patient partners, staff, and researchers,” she says.
Roberta is Coast Salish from the Snuneymuxw/Cowichan Tribes, a mother and grandmother. Elder Roberta has committed to professional and volunteer work in the Health, Social Services, and Education fields for most of her career. She is dedicated to building a strong base of knowledge to make improvements to the health care system, specifically for Indigenous people. Elder Roberta has worked in partnership with researchers at the UBC School of Nursing on a number of studies. In that role, she has guided study activities around Indigenous approaches to health. Her role has been to ensure that the research is relevant and responsive to Indigenous contexts and to assist in implementation of interventions within clinical settings. She oversees ceremonial and traditional aspects of research projects, including integration of traditional healing approaches with ‘Western’ approaches. The studies she has been involved with relating to structural and interpersonal violence and trauma – including colonialism, racism, and poverty – and their effects on health care access and quality for Indigenous people.
Danièle, born in Belgium, arrived in Quebec at the age of 14. She retired from the University of Quebec in Montreal, after 23 years as an administrative executive and lecturer at the School of Management Sciences. She holds a social service diploma and a master’s degree in public administration from ENAP. Since her retirement, she has volunteered for various organizations with diverse missions: mental health, sick children, children’s home, health promotion group, collective kitchen for seniors, etc. Her involvement with Diabetes Action Canada allows her to continue to be involved in the life of society. Sharing, teaching, listening are the values that have always been at the heart of its interests and actions. A mother of two, she was diagnosed with type 2 diabetes a long time ago (around age 35). For a long time she faced this situation alone and it was with great pleasure that she learned about Diabetes Action Canada and the possibility of joining this group and participating in the search for solutions and support.
Debbie is the Patient Partner co-lead for the Diabetic Retinopathy Screening Program and serves on the Diabetes Action Canada Steering Council. She has been living with type 1 diabetes (T1D) for 53 years. Due to diabetic retinopathy, she completely lost her eyesight 27 years ago. In 2003, she was part of a Clinical Islet Cell Transplant Trial (aka Edmonton Protocol) and was fortunate to receive two islet cell transplants, which she is certain saved her life from diabetes complications. Research has played a major role in her health and wellbeing. Throughout the years Debbie has had many opportunities to speak to community groups on behalf of Diabetes Canada and JDRF about how research has had such a positive effect on the lives of so many.
I have been living with Type 2 Diabetes for that past 40 years and take insulin therapy to manage it. I originate from India and have lived in Canada since 1976. I studied at McGill University in Montreal and until recently had my own business with 15 employees. I am actively engaged in volunteer work at the McGill University Health Centre (MUHC) in Montreal. I am Treasurer of the MUHC Patients Committee and an elected member of the Medical Mission Committee. I am also a member of Montreal General Hospital Patients Committee and participate in research group discussions.
Nadia is a policy analyst who has been living with diabetes type 2 for 11 years. She holds graduate degrees in Law, Management and Project Management. She is passionate about research and is interested in cultural aspects, wellbeing, nutrition and support given to immigrants dealing with diabetes. She advocates for raising awareness and the empowerment of patient partners to make a difference. She believes in knowledge transfer, empowerment, peer support, mentoring and loves teaching. She became a patient partner with Diabetes Action Canada in February 2017 and serves as a member of Diabetes Action Canada’s Francophone and Immigrants Patient Circle and Steering Council. Nadia lives in Gatineau, Quebec.
Frank Tang, a Patient Partner at Diabetes Action Canada, is engaged in active diabetes research. His mother had Diabetes in the last ten years of her life and he witnessed first-hand as she struggled with glaucoma, loss of a toe and congestive heart failure. Frank is interested in identifying the challenges individuals face in the health care system and factors that contribute to use of health care services by individuals with diabetes and other chronic health conditions. Frank is a Professional Engineer in Nuclear Engineering with Ontario Power Generation for almost three decades and an adjunct Professor at Ryerson University teaching Information Technology Systems Management and Supply Chain Management courses.
David (Dave) lives in Fredericton, New Brunswick. He is a Patient Partner with Diabetes Action Canada (DAC; joined in 2018), the Maritime SPOR Support Unit (MSSU; joined in 2013), and Patients for Patient Safety Canada (PFPSC, associated with Healthcare Excellence Canada; joined in 2012). From 2005-2011 he chaired the New Brunswick Surgical Care Network Advisory Committee, which designed and implemented new procedures that reduced surgical wait times in New Brunswick by 50-70%. During 2012-2015 he was the patient representative on the New Brunswick Primary Health Care Steering Committee, which changed the delivery of primary health care in New Brunswick by producing an extensive Guidelines document adopted for Family Medicine New Brunswick (2017). Dave currently serves on five DAC committees, and is a patient partner on four CIHR grants. Since March 2019 he has co-facilitated twelve courses on Patient Oriented Research.
From 2003-2013, Dave was a caregiver for Solveig, his wife of 50 years, as she dealt with five cancer diagnoses, three surgeries, two radiation therapy sessions, and three chemotherapy sessions. Solveig passed away in March 2013 and Dave misses her every day.
David is a retired dentist from Parry Sound in Northern Ontario and has lived complication-free with type 1 diabetes for 70 years. He was one year old at the time of diagnosis when treatment and management were still very primitive. He has been connected to diabetes support throughout his life. In the 1980’s he co-organized a diabetes self-care group at the local hospital that included patients, nurses, doctors & family supporters. He also participated in numerous insulin antibody studies in Toronto. In 1980, he became Ontario’s first insulin pumper, with a very large and now archaic one-program insulin pump. In the 1990s he was appointed to serve on the Board of the newly formed provincial Northern Diabetes Health Network. NDHN proved to be highly successful, efficient and effective in improving lives & greatly reducing the debilitating diabetic complications over 20 years. He served every position on the executive, including President and Chair for several terms. He was inducted into the renowned 50 Year Club of the Joslin Diabetes Center in Boston, U.S.A. in 1997 as a survivor, and still complication free after many years of very intensive management. He finds it hopeful that what started as a very small group of members has now become a very large one that continues to grow! He was an early participant in Dr. George King’s ongoing Longevity Study at Joslin, and continues to be involved in the Canadian arm of the study.