Over the years, we’ve conducted a number of studies that were designed to learn about families’ experiences and perceptions. While we’ve learned a lot, and applied some of this learning to how we provide care to children and families enrolled in pediatric weight management, it’s fair to say we could have done more to engage families in our research.
The directive to involve patients (and in our case, families) in clinical research comes from the desire to conduct research that is most meaningful to and potentially helpful for those who stand to benefit from new or improved therapies. Increasingly, funding agencies and academic journals are recognizing the importance of ‘patient-oriented research’ or POR. Funders and publishers have the power to influence what and how clinical research gets supported and disseminated, so if they establish systems that reward research that engages patients and families in research, those of us doing clinical research have a practical (not to mention moral) imperative to follow their lead. Both Alberta Innovates and the Canadian Institutes of Health Research launched POR initiatives in recent years. Our own Mayam Kebbe (PhD Student, Dept of Pediatics, UAlberta) recently received a scholarship to support her POR research in childhood obesity. It’s clear that POR is not a passing fad, but a way for funding agencies, researchers, clinicians, trainees, patients, and families to think about and conduct clinical research in partnership that has the greatest likelihood of being valued and applied in the health care setting.