“You have that sense you’re setting up a legacy, that you’re a part of a movement and that your participation will hold value for the future.”
Sandyne McCutcheon, an early recruit of Alberta’s Tomorrow Project, shares her passion as a participant and a member of Participant Advisory Committee
Sandyne McCutcheon has been a participant with Alberta’s Tomorrow Project (ATP) for 15 years. She became aware of the study through a recruitment drive in St. Albert, Alberta. Sandyne’s initial interest in the study was piqued because of the fact it was following people over time to gain evidence, and she knew it was the right thing to do for that reason.
“You knew this was going to be for the greater good, to be a part of something that’s larger than yourself,” reflects Sandyne. “We won’t likely know the direct impact or results of how we’ve contributed as participants, but you have that sense you’re setting up a legacy, that you’re a part of a movement and that your participation will hold value for the future.”
Sandyne, and many participants, were motivated to join ATP as volunteers knowing they would be contributing to valuable research that could one day lead to scientific advancements cancer/chronic disease treatment and care that could benefit future generations. When ATP began recruiting for members to join the Participant Advisory Committee (PAC), Sandyne saw an opportunity to get involved at an even deeper level. The PAC was a new initiative launched in 2020 by the ATP team at the beginning of the pandemic to better engage with and involve the diverse participants of the study. It was an innovative idea, now adopted by other research studies provincially and nationally.
“There are lots of organizations where you can be a part of a mass of volunteers, but what I saw as the opportunity was the chance to establish a tier of involvement that ties right back to the volunteers.”
Sandyne shares being a part of the PAC allows her and the other members to contribute at a level that will enhance the experience of all participants, bringing the perspective of participants into ATP’s decision-making. The first meeting was meant to happen in-person, but when the pandemic struck, ATP and the PAC had to shift to an exclusively virtual membership. The committee consists of 29 participants from across the province, and even with the challenges the pandemic presented, this group of dedicated individuals has provided valuable feedback and brought forward ideas that have made a real impact on how ATP engages with its participants. While working together remotely has not been easy, Sandyne says it’s been surprising how well the PAC works together as a group and can keep things moving even though they’ve not yet had the opportunity to meet in-person.
“I see it as the chance to help influence the direction ATP goes for volunteers (participants). I get to be on the edge of that, with like-minded people, who have taken their commitment to the next level, and for the greater good of all volunteers. We will have the chance to shape everyone’s experience.”
While the opportunity to benefit the experience of ATP’s participants is the main motivator behind Sandyne’s PAC membership, she also shares her appreciation for being able to learn more about the research itself. The deeper involvement of PAC has allowed her to gain more insight into what is actually happening and how the data is being used, and it further cements that what she is supporting, both as a participants and member of PAC, is making a larger impact.
Sandyne believes there is much to look forward to in the future of ATP and PAC, and is hopeful to meet her fellow PAC members in person for the first time in 2022.