Historically, clinical researchers conducted their research “on subjects” rather than “with participants”. Beyond terminology, this difference reflects a philosophical shift and evolution in how clinical research is conceptualized, planned, and conducted.
Whatever grassroots efforts initiated a patient-centred focus to clinical research, funding agencies have taken up the torch, directing substantial resources to research that is designed to include individuals and groups in the studies that are meant to benefit them. The Canadian Institutes of Health Research, National Institutes of Health (US), National Institute of Health Research (UK), and Alberta Innovates are just some of the agencies from around the world that have embraced this imperative. The refrain “nothing about us without us” certainly holds true in the movement for patient-oriented research (POR).
A recent example of POR from our field of pediatric obesity comes from Ian Zenlea and his team of clinicians and researchers at the KidFit Health and Wellness Clinic in Mississauga, ON. In developing and refining their new clinical program, Ian and his team worked with parents and families to co-create their program, helping to maximize the likelihood that families’ needs and preferences were met. They recently published a paper (pdf below) highlighting their efforts and showing how much families valued the chance to get together to share common experiences and challenges.