Parents Know Best: Parent-led Research Identifies Real Issues, and Often How to Solve Them
When Jonathon Maguire was appointed the Lawson Chair in Patient Engagement in Child Nutrition in 2019, his goal was to ensure that parent and family voices were reflected in all aspects of research conducted at the Joannah & Brian Lawson Centre for Child Nutrition.
To do this, Maguire established a patient and clinician team (PACT) as part of TARGet Kids!. The PACT is working to ensure child health and nutrition research is led by, and relevant and accessible to, families across the GTA and beyond.
TARGet Kids! is a child health research network following the long-term health outcomes of children in 11,000 families across Ontario. Co-ordinated by The Hospital for Sick Children (SickKids) and St. Michael’s Hospital, with administrative support from the Lawson Centre, TARGet Kids! studies the links between early life experiences and later health issues, including obesity and developmental problems.
The PACT, which includes 15 parents, helps select and guide nutrition research to ensure it focuses on real issues faced by real families.
Having worked at SickKids, and now the Canadian Institute for Health Information, Shannon Weir-Seeley is no stranger to health research. Her first child joined the TARGet Kids! cohort in infancy, and seven years later she is now the PACT’s parent lead.
“As a parent you are bombarded with information about what is best for your child, particularly when it comes to health and nutrition,” she explains. “We’re all trying to do the best we can, and make decisions that are right for our families. But to do that, parents need reliable sources of information that everyone can access and understand. Having parents involved in research can help make that a reality.”
The group meets quarterly to discuss everything from what research needs to happen, to how to encourage families to participate, and how to communicate the results in ways that both clinicians and parents can use.
“Medical research has traditionally been very hierarchical,” explains Maguire, co-principal investigator of TARGet Kids!. “In the past, patients were seen as passive participants in medicine. Now we see patients as partners and leaders. In research, our parent panel tell us what issues need to be solved, and often how to solve them.”
Based on this understanding, the group has focused heavily on research priorities, whittling down a list of over 100 potential research questions to a top 10, all based on what matters most to parents. This list includes research on nutrition in childcare settings, how to prevent childhood obesity, how to support mental health and how nutrition affects child behaviour. In turn, this informs which research projects are led from TARGet Kids!.
Using this approach, Maguire has successfully secured grants worth over $3.6 million and published 29 papers over the past year.
In light of the pandemic, the group is also working on a number of COVID-related studies to understand how the pandemic is affecting children’s health.
Of course, the journey from research question to publication takes time, but the group has had success with studies directed by parents attracting significant interest from clinicians, media and other parents.
“There are multiple benefits to doing research that is more relevant to families. These studies get more attention and are more likely to be applied in practice,” explains Maguire, who is also a staff paediatrician and scientist at St. Michael’s Hospital and a professor of paediatrics and nutritional sciences at U of T. “We saw this with a recent study on whether giving whole or reduced fat cow’s milk in childhood gives better protection against obesity. The paper was picked up by over 100 news sites and was the most popular American Journal of Clinical Nutrition article in 2019.”
Dana Arafeh, the Centre’s Patient & Family Engagement Specialist, joined the team in early 2021 to support the PACT. As part of her role, which spans research and clinical patient engagement for the centre and the Department of Family and Community Medicine, Arafeh is focused on growing the PACT to ensure a wider variety of voices are heard.
“We have a fantastic small group of parents who are passionate about childhood nutrition and supporting research in this area. Our goal is to find new ways of integrating parents to ensure they are engaged at the beginning of every project. Plus, we want to expand the group to be a better representation of parents within the GTA. Recently we’ve welcomed two fathers to the team, which was a first for us.”
One of these additions is Rafael Correa, a Toronto resident and father to a nine-year-old.
“My wife has been part of the PACT since my son was born, and when I heard they were looking to expand I was keen to contribute. Like many families we share household tasks and are both responsible for our son’s health and nutrition, so it makes sense to hear the perspectives from both sides.”
“Plus, it feels good to be part of something bigger than yourself. The group is helping shape health and nutrition research for our children, and everyone’s children.”