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
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.
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 4 who is passionate about Type 1 Diabetes advocacy because of her son, Brayson (age 8), who has been living with the disease 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 disease.
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
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.
Doug is the Patient Partner co-lead for the Digital Health to Improve Diabetes Care Program. Doug has lived with T1D since 1968. Initially, with only urine testing and animal-derived insulins, management was difficult to achieve and Doug is very grateful to be alive and healthy 49 years later! In2009, he volunteered in a clinical trial to determine whether a Sensor-Augmented Insulin Pump could enable patients to lower their A1C. As a measurement and control engineer, he saw this as a tool finally capable of controlling blood glucose levels. His A1C level reduced notably during the trial and as a result, has continued to use this technology to improve his blood glucose control.
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.
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.
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 50 years. Due to diabetic retinopathy, she completely lost her eyesight 24 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 she 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.
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.