Expanding the culture of research
Partnership bridges the worlds of statistics and human experience
As her patient load tripled over three years, Dr. Aisha Bruce decided that she needed to find out if the care provided at the pediatric sickle cell clinic at the Stollery Children’s Hospital was meeting patient needs.
Most of the new families coming to the clinic were immigrants from continental Africa, where sickle cell is most prevalent. They were not only dealing with an unfamiliar health care system, but many felt stigmatized for carrying the inherited disease that is lethal back home.
“I wanted to find out if we were delivering care in a culturally appropriate and sensitive manner,” says Bruce, a pediatric hematologist and an assistant professor at the University of Alberta. “But I knew that the quantitative research training I had received in medical school would not answer my questions.”
She got the support that she needed from research coordinator Tatjana Alvadj, who has expertise in qualitative research. Alvadj is funded by the Women and Children’s Health Research Institute through its partnership with CUP (the Community-University Partnership for the Study of Children, Youth and Families). Alvadj guided Bruce through the process of designing and carrying out a qualitative research study. The study found that the clinic was providing good patient care, but that some improvements could be made.
The research support provided to Bruce and her sickle cell study (also funded by WCHRI) is just one example of the research expertise that WCHRI has been able to add to its complement of services through its partnership with CUP. CUP’s expertise in qualitative research, knowledge translation and community and patient engagement has greatly expanded the research supports that WCHRI is able to offer through its programs and member services.
Perhaps even more importantly, the WCHRI-CUP partnership has expanded the perspectives of both partners. It has brought together the traditional statistical methodology of medical research with the complex exploration of human experience and culture used by the social sciences. WCHRI was ahead of its time when, in 2008, it bridged the two worlds through its partnership with CUP, says Dr. Maria Mayan, an assistant director of CUP, a WCHRI academic lead and a member of WCHRI’s scientific advisory committee.
“It was really innovative thinking because there was a different medical research culture at the time,” adds Alvadj. “Today, we expect health research evidence to have an impact sooner on our lives and what better way to achieve that than by involving the people who will be affected most by the research, and the health-care practices and policies that emerge.”