Paediatric patient family engagement with clinical research at a tertiary care paediatric hospital.

Patient-focused research is the cornerstone of evidence-informed health care (1), which can improve the health of patients while improving the cost effectiveness of the health care system (2). While evidence-based care is imperative, undertaking clinical research in the paediatric population presents many unique legal and ethical issues (3,4). Children are considered to be a vulnerable population and, as such, numerous methodological challenges related to their participation in research arise (3). Predictably, these difficulties may deter researchers and funding bodies and may have contributed to the dearth of high-quality paediatric research (4,5). As a result, <40% of paediatric medical decisions are supported by sufficient evidence (6), and most of these decisions are based on the results of research conducted with adult populations or no research whatsoever (7–10). Despite the challenges surrounding paediatric clinical research, little progress can be made in the clinical care of children without research and their involvement therein. In fact, paediatric research is necessary and important for the benefit of all children, as stated by the Royal College of Paediatrics (11). Thus, health care providers and researchers should advocate for research participation by the paediatric population (12). Moreover, studies have demonstrated that patients treated in institutions that are actively involved in research have improved health outcomes (13,14). The purpose of the present study was to determine how frequently paediatric patients and their families participated in research activities at a tertiary paediatric hospital, and to explore factors that influence patient families’ decisions and perceptions surrounding research participation. Establishing a baseline proportion of patient participation provides a stage for advancement, and monitoring trends will help to identify factors that influence involvement and aid in the development of programs to encourage their invaluable participation in clinical research.