Conducting Patient-Oriented Research in Pediatric Populations: A Narrative Review

Children (Basel). 2024 Oct 19;11(10):1266. doi: 10.3390/children11101266.

Abstract

It has become increasingly common for researchers to partner with patients as members of the research team and collaborate to use their lived experiences to shape research priorities, interventions, dissemination, and more. The patient-oriented research (POR) model has been adopted by both adult and pediatric health researchers. This cultural change to conducting pediatric health research brings with it new methodologies, tools, challenges, and benefits. In this review, we aim to provide guidance on how to conduct POR for pediatric populations using examples from the literature. We describe considerations for engagement before the project begins, for engagement across the research cycle, and for measurement and evaluation. We aim to show that conducting POR is feasible, beneficial, and that many common challenges and barriers can be overcome with preparation and usage of specific tools.

Keywords: Canadian Institutes of Health Research (CIHR) pediatric research; and childhood disability research; diversity and inclusion in research; patient and public involvement; patient-oriented research; patient-partner; person with lived experience; research engagement.

Publication types

  • Review

Grants and funding

The work was supported by the CHILD-BRIGHT Network, funded by the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (CIHR-SCA-145104). L.N. is supported by the Azrieli Accelerator as an Assitant Professor in Youth, Sibling, and Community Engaged Research in the Faculty of Social Work at the University of Calgary. S.P.M. is supported by the Hudson Family Hospital Chair in Pediatric Medicine (BC Children’s Hospital) and the James & Annabel McCreary Chair in Pediatrics (University of British Columbia).