While Patient Partnership in research is at the core of the Diabetes Action Canada mission, it was clear from the inception of the organization that having people with lived experience at all levels of our programming would be an essential element of our success. Now, as we move into DAC 2.0, that commitment to patient partnership in governance continues to grow.
“For some organizations, people with lived experience sit on committees and are part of research teams, but they are not at the head of those tables. For Diabetes Action Canada, we wanted to see lived experience represented throughout our teams, which includes the Steering Council that leads our direction, and our Research Governing Committee” says Tracy McQuire, Executive Director at Diabetes Action Canada.
The Diabetes Action Canada Steering Council is led by Dr. Cindy Bell, who is the mother to two daughters with type 1 diabetes. Dr. Bell is also a highly-regarded scientist who provides a seamless blend of those two worlds.
Patient Partner, Pascual Delgado, is also a member of the Steering Council, and in 2023 was named Chair of the Network’s Equity Diversity and Inclusion Committee. Originally from Cuba, Delgado, who lives with type 2 diabetes, is passionate about raising awareness about diabetes in immigrant communities where there may be barriers to accessing care. He feels it is essential to include Patient Partners in governance given their lived experience, and also knowing that many will have held these types of management roles in other areas of their careers. “They can contribute their novel or never-considered expertise in the DAC community,” he says. “Most importantly, if they come from other cultures or diverse backgrounds that experience can enrich our research, aims and projects.”
For Christina Mulchandani, the new Co-Chair of the Research Governing Committee, living with type 1 diabetes since 2016 has made her aware of the need for lived experience in organizations dedicated to diabetes. With more than 18 years of employment in human resources she also brings very direct career experience to the table. “My diagnosis transformed my direction in life,” she says. “Despite the necessity to proactively manage my diabetes, I am driven to be involved on a larger scale to help my community living with diabetes.”
This same drive fuels Patient Partner, Sylvie Dostie, who was diagnosed with type 1 diabetes when she was five years old. A member of the DAC Steering Council and recently elected chair of the Francophone and Immigrant Patient Circle, she sees the feedback loop between people with lived experience and researchers as critical. “We are the intermediaries between patients and researchers. This can make communication easier for everyone,” she says of the governance link.
Patient Partner, Dana Greenberg, agrees that this link is essential. As an experienced fundraising professional and a person living with type 1 diabetes, she is keen to bring her voice to developing policies that will support the aims of the organization. Having been a co-PI on several research programs and a long-standing Chair of the DAC Collective Patient Circle, she knows the many diverse roles Patient Partners can play and how governance can support them appropriately. “It is important to me to continue to help develop policies related to meaningful patient engagement, “ she says.
“We are lucky to have such an engaged group of Patient Partners interested in supporting our work, and we are looking forward to seeing where their direction leads us,” says McQuire.
Story written by Krista Lamb