Family involvement in research leads to powerful outcomes

Most health research relies on some understanding of lived and living experience. However, establishing a link between patient and researcher isn’t always a simple relationship to navigate. The Family Engagement in Research (FER) course helps bridge that gap. 

Presented by the Azrieli Accelerator and One Child Every Child at UCalgary and hosted by CanChild at McMaster University, the FER course is accepting applications for a special, Alberta-based cohort. Tailored for people with research interests or lived experience with neurodevelopmental conditions, the program runs online for 10 weeks beginning Feb. 3, 2025. 

“Data with a soul”

“When children, youth, families and adults are invited to get involved in research, amazing things can happen,” says Rae Martens, knowledge broker with the Azrieli Accelerator. “Creating opportunities for them to participate in the research process, from start to finish, gives them validation that they belong in that space. It also provides researchers with rich, meaningful information. It’s data with a soul!” 

The FER course emphasizes the importance of partnerships between researchers and families, which can present unique challenges but be deeply rewarding. Through the program, participants learn to navigate these relationships, ensuring everyone’s voice is heard and respected. It is not just about collecting data, it’s about fostering a reciprocal, impactful collaboration.

Real-life impact: Dr. Sarah MacEachern and Greta Heathcote’s journey

In early 2023, Dr. Sarah MacEachern, MD PhD, was a new faculty member in the Department of Paediatrics at the Cumming School of Medicine. She was also at the beginning stages of setting up the Precision Neurodevelopment Lab, a research team focused on finding solutions to challenges faced by children and youth with neurodevelopmental conditions and their families. 

While seeing patients in clinic as a developmental paediatrician, MacEachern met many neurodiverse children and youth. She wanted her lab to be built around those patients and their experiences. “I wanted to make sure the work I was doing was grounded in lived experience,” she says. “I was also humble enough to know that I may not know the best way to do that. How do you involve patients in a way that is reciprocal rather than transactional? What does meaningful engagement look like?” These curiosities led her to sign up for the FER Course. 

Meanwhile, Greta Heathcote, associate director of the Work-Integrated Learning and Neurodiversity Initiative at UCalgary, was also considering the course. “I didn’t know if I belonged in the program but having worked in the post-secondary environment my whole career I was intrigued by the opportunity to hear from researchers about their journey in a different way.” As the parent of a neurodiverse son, Callum, she was also drawn on a personal level. 

The beginnings of a long-lasting partnership 

During the course, MacEachern and Heathcote were matched together to complete a group project. “It was clear that the universe wanted us to meet,” says MacEachern. Their synergy was immediate as the two got to know each other throughout the ten-week duration of the program. After the course, MacEachern was inspired by her learnings and invited Heathcote and her son to join the research team at the Precision Neurodevelopment Lab.

The power of partnership: Transforming research with lived experience

Two years later, they are going strong as research partners having helped co-design research sessions, providing feedback on tools and shaping studies. Getting involved in research has been a particularly transformative experience for eleven-year-old Callum. As a young person who is neurodivergent, the insights he offers MacEachern and her team help shape the direction of their research so it can have the greatest impact on the community they serve. “Most people coming from a research or clinical perspective are used to being the content experts, but the people with lived experience are the true content experts. You have to come into it with a spirit of openness,” says MacEachern.   

Callum agrees. It’s important for kids and families to get involved and add their voice to research: “They’re the ones that have the personal experience. They can help the researchers make things that actually work and help people with learning disabilities have a better experience in life,” he says.

Greta and her son’s active involvement as research partners has contributed greatly to MacEachern’s lab and participation in the FER course prepared them for this journey. “I’ve unfortunately heard of cases where family-researcher partnerships haven’t worked particularly well,” says MacEachern. “For our team, it’s incredibly important that research partners feel heard, listened to and respected and can see how their voice shapes the work that we do.” 

Grab your spot and apply by Dec. 20

For those wondering if this course is suitable for them, “there’s no right or wrong types of person,” says Heathcote. “If this course has piqued your interest and you are considering it, then you’re probably right for it! It provides a very judgement-free space where you can explore your role as a caregiver and what impact you can have in research.” 

This is also true for people from within the research community who want to learn more about how the power of lived experience can shape impactful, relevant research. “I did the course out of a desire to be a better researcher and a better doctor. It was a life-changing, career-changing experience and it truly changed the way I approach research and clinical practice,” says MacEachern.

Applications for the winter 2025 cohort of the FER course are currently open to community members and researchers with interests in neurodevelopmental conditions until Dec. 20. Thanks to sponsorship by the Azrieli Accelerator and One Child Every Child, the course is free for participants. 

Visit the website to learn more or reach out to azrieli.accelerator@ucalgary.ca.