For Mary Beaucage, involvement in research is an eye-opening, empowering experience

Like so many of the patients and caregivers who volunteer their time with Can-SOLVE CKD, Mary Beaucage isn’t involved in just one aspect of the network, she’s involved in several.

Mary joined the network at its official start in spring 2016, after having helped to develop what would become the Transplant Ambassador Program. She is a member of the Patient Council and was recently elected to a leadership role as one of the council’s three co-chairs. Mary also sits on the Indigenous Peoples’ Engagement and Research Council and the Learning Pathway Development Committee that is developing Indigenous cultural safety training for researchers, policy-makers and others.

She has also served as chair of the Patient Council’s Knowledge Translation, Communications, and Outreach Working Group and as a member of the Knowledge User/Knowledge Translation (KT/KU) Committee that is working to move research knowledge into regular practice. On top of all these roles, she is actively engaged as a patient partner on research teams and involved with other health initiatives beyond Can-SOLVE CKD.

“Before I started with the Can-SOLVE CKD Network, I was mostly using Facebook to connect with other people with kidney disease,” says Mary. “Soon after I joined the network in the spring of 2016, I was flown to Halifax for the first Annual Meeting and I had the opportunity to meet a bunch of people in person. I was able to meet different Indigenous people from across the country who I wouldn’t have met otherwise, and I’m finding strength in talking to others, especially those from Indigenous and northern communities.”

Hailing from the Nipissing First Nation, outside of North Bay, Ontario, Mary works in retail management with expertise in opening stores, recruiting, hiring, and training, and analyzing and forecasting sales. She has type 2 diabetes, which caused damage to her kidneys, and in June 2013, she was diagnosed with end-stage renal disease. She went on dialysis right away, three times per week for four hours at a time over a two-year period. During this time, she experienced several severe and painful infections. Very thankfully, in March 2015, she ended up being the recipient of a living donor kidney transplant from her cousin Janice Pulak who lives in Thompson, Manitoba.

“As I went through all of this, I found I had to do a lot of my own research to be my best advocate, and I took an active role in my care and learned what I could,” says Mary. “My wish is for patients to be confident in their choices and armed with accurate knowledge and support.”

“I’ve worked with Mary on a number of initiatives and she’s been a fantastic resource,” says Selina Allu, Can-SOLVE CKD Knowledge Translation Broker who most recently met with Mary and other members of the KU/KT Committee in Calgary in March.

“Mary has creative out-of-the-box ideas about different ways patients with kidney disease can tell their story. For example, how you can effectively use visual images, illustrations, and social media platforms rather than standing up in front of a group and speaking about it. While she was on dialysis, Mary kept a blog and connected with so many people across the country; a testament to her exceptionally likeable personality! She’s honest, real, articulate, a quick learner, and her views really complement a conversation.”

“I like to talk,” says Mary. “I like to communicate, so I find that it’s easy for me to share my story, and I’m not afraid to share all aspects of my story. I’m a positive person but I’m also a firm believer in being real about describing my story. I think it’s important to know that it’s not always sunshine and rainbows. Hearing patient stories and perspectives is an opportunity for researchers to build their people skills. Working with patients can be emotional. This is very personal for us.”

And Mary says patients also learn from researchers.

“It gives us perspective as well to hear their passion about what they’re doing.”

Reflecting on her past two years with Can-SOLVE CKD, Mary says, “It’s been a real eye-opener. It’s been really interesting to see how other people have gone through similar experiences, and how different or similar experiences are, depending on where you are in the country. There’s been personal development – the relationships I’ve built with researchers and with fellow patients. I definitely feel more empowered to share my story. The knowledge I’ve gained has challenged me in my own personal development, which can only help me when I get involved in other things with the network.”