PaCET participants facilitate change one project at a time
On the first Friday of March, a group of six women, (four trainees and two program leads) meet on the fifth floor of the Edmonton Clinic Health Academy building. Sitting around the office in plush chairs with coffees in hand, the participants take turns discussing the progress and setbacks in their research projects.
The first to start is Bethan Kingsley who’s been working with the Terra Centre and Brentwood Family Housing Society to facilitate a dialogue with young parents receiving supportive housing to see if there are areas for improvement, such as flexible policies for housing tenants. “I feel like we’ve built a good rapport with the young mothers, but at some point, we have to ease out,” says Kingsley. “I’m struggling with that. So, I am not sure what is going to happen after we’re done with the research.”
“That’s one of the challenges with community-based research: knowing if and when it is ethical to leave,” Lisa Tink expresses, nodding in understanding.
Tink recently came back to academia to answer some questions she identified while working in the recreation sector.
Interchanges like this are common during these meetings. All of the women bring together different ideas and perspectives to each of their projects, but there is one commonality: participatory research. Participatory research is a broad-based approach that involves patients, clinicians, community groups and/or the government in a multi-lateral conversation about the research that will affect all parties involved. All the participants have chosen this type of research because, in order to answer the questions they are studying, they need to have a “full picture” understanding of all the people affected. That is why the Patient and Community Engagement Training (PaCET) program was created — to support reaching that full picture lens, which is also strengthened through a partnership between WCHRI and the Community-University Partnership for the Study of Children, Youth and Families (CUP).
Each year, researchers apply to join the program and conduct participatory research focused on improving women’s and children’s health. The four awardees in 2015-2016 were Bethan Kingsley, Jocelyn Shulhan, Tasneem Siyam and Lisa Tink, who are working to tackle complex questions by engaging in and learning from the communities they are researching. “After this program, people are much better citizens and can participate in a different level of research than traditionally trained researchers,” says Dr. Maria Mayan, CUP’s assistant director and PaCET program lead. “It allows them to ask questions of themselves and the world that they may have never considered before.”
Shulhan is engaging parents of infants in the neonatal intensive care unit (NICU) to determine the most important outcomes for clinical trials. “Bringing their voices forward at the initial planning stages ensures that future clinical trials will answer problems that are important to families,” Shulhan adds.
The trainees have started to celebrate the small changes spurred by their research. Siyam, who is working to develop a tool to help women make informed decisions regarding early surgical menopause, has already seen some successes from her study. “The women in my study have created two support groups,” she says. “It’s really wonderful to see them come together and get the support that they need.”
After finishing their discussion and coffees, the trainees rise — ready to take on the next steps for their projects. They’ve all had an opportunity to express their wins and challenges to a group that truly understands the value of their work.
“The wonderful thing about WCHRI creating the PaCET program is that it’s not only about the quantifiable outcomes, like most research studies,” says Tatjana Alvadj, WCHRI research coordinator. “It’s really about expanding something in our hearts and our minds as researchers.”
Bethan, Jocelyn and Lisa’s research were all funded by the generous support of the Stollery Children’s Hospital Foundation, through WCHRI.
Tasneem’s research was funded by generous supporters of the Lois Hole Hospital for Women, through WCHRI.