Patients of today influence the research of tomorrow
Diabetes Action Canada Network working to prevent diabetes and its complications and transform the lives of people living with diabetes
Building collaborations between researchers and patients
November 14, 2018
For too many Canadians, diabetes is no stranger:
- About 3 million Canadians (8.1% of the population) have been diagnosed with diabetes.
- Between 3 and 20% of pregnant women develop gestational diabetes, depending on their risk factors.
- Up to half of Canadian Indigenous adolescents have multiple risk factors for type 2 diabetes.
- Diabetes causes 50% of all new cases of kidney failure.
- Most common cause of blindness (<65y) and lower limb amputations.
- Complications from diabetes cost Canada $16 billion per year.
Despite the prevalence of diabetes and its complications, the existing research and treatment options show room for improvement. Some patients feel that researchers and health care providers do not adequately represent their voices and experiences. The Strategy for Patient-Oriented Research (SPOR) Diabetes Action Canada Network was developed to bridge this gap. Just over two years ago, this national Network was created to bring together researchers, patients, policy makers, academic health centres, health charities, and other stakeholders that are looking at effective health care solutions, prevention, and treatment for type 1 and type 2 diabetes. The Network’s goal is to facilitate meaningful connections between patients, primary health care providers, and specialists, researchers and health policy experts to improve health care and realize significant cost savings within the health system.
“Diabetes Action Canada was created under the SPOR initiative to accelerate the movement of new knowledge into practice. With the assembly of a national network of scientists, health care practitioners, and other diabetes experts, Diabetes Action Canada has been able to expand upon the idea of patient engagement. Researchers are no longer working in isolation; Diabetes Action Canada relies on the input of patients for the planning and direction of programs at every level.”
Enabling effective care paths
The Network is comprised of approximately 100 patient advisors, three patient circles, and nearly 100 researchers distributed across nearly every province, among other stakeholders, partners, and institutions, all working together on a variety of research projects to help meet the needs of specific patient groups.
One example is a partnership with the Aboriginal Youth Mentorship Program. Through this program, Indigenous adolescents mentor elementary school-age Indigenous children to promote healthy inclusive communities. The program was co-designed by community elders and includes after-school activities, healthy snacks, games, and traditional education and leadership activities. Already, the program is showing positive results, with participants reporting higher self-esteem, reduced weight gain, and the ability to make healthier dietary choices. As a result, the program hopes to make a major impact in reducing the incidence of type 2 diabetes in the Indigenous community.
“Diabetes Action Canada has also facilitated the further development of the smartphone application, bant, which can be used by patients and doctors to monitor personal health data and engage in new research initiatives. Canadians have all this information technology, tools and discoveries available to us now and there are remarkable opportunities to make patient engagement even easier.”
Diabetes Action Canada is making great progress towards developing a national type 1 diabetes database, something they feel is absolutely necessary to connect those living with type 1 diabetes to researchers investigating the condition. The database will facilitate patient and community involvement to set targeted research priorities that address health concerns of those affected by type 1 diabetes. The bant app will be integrated into this national diabetes database as an important entry point for people living with diabetes to provide and receive important information.
Older adults have the highest prevalence of diabetes of any age group. This fact spurred Diabetes Action Canada to partner with McMaster University’s Aging, Community and Population Health Research Unit Program. The ultimate aim of the partnership is to improve diabetes management in older adults with multiple chronic conditions so that they can remain in their homes. To help improve health outcomes for these patients, the partnership focuses on a unique collaboration between nurses, home visits from certified diabetes educators, monthly community-based group sessions at places such as the YMCA, and monthly case conferences for the care team. Preliminary findings show that this approach is leading to improved quality of life, better self-management, and a reduction in depressive symptoms relative to those receiving the usual standard of diabetes care.
Diabetes Action Canada is rolling out and testing programs to screen people with diabetes for eye complications to prevent blindness, and diabetic foot ulcers to prevent lower limb amputations. Health authorities are looking to Diabetes Action Canada for cost effective, practical solutions to prevent and treat the many devastating and costly complications of diabetes.
The Diabetes Action Canada Network is remarkably comprehensive in its scope, and Drs. Lewis and Després see many benefits from taking this wide-ranging approach to diabetes research. For Dr. Després, patient engagement has re-engineered the way that he works. “What’s amazing to see,” adds Dr. Lewis, “is how empowered patients have become through this process. Nothing speaks with greater authority than people living with this illness themselves.”
- Strategy for Patient-Oriented Research
- “Diabetes 360˚: A Framework for a Diabetes Strategy for Canada. The report contains the recommendations of a coalition of nearly 120 experts from across Canada.
- Diabetes Action Canada Network Annual Report 2017-18 Annual Report [ PDF (2.3 MB) - external link ]
- Message from the SD, CIHR-INMD, Dr. Norman Rosenblum for National Diabetes Awareness Month and World Diabetes Day
- Diabetes, Health Canada
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