Development of the patient-oriented research curriculum in child health (PORCCH)

Research Involvement and Engagement

Linda Pires¹  Aliza Karoly²  Francine Buchanan³  Graham McCreath⁴  Colin Macarthur⁵  Nicola L. Jones⁶  Catharine M. Walsh⁷ 

[1] Canadian Child Health Clinician Scientist Program, Toronto, Canada;Family Advisor, Hospital for Sick Children, Toronto, Canada;Family Advisor, Hospital for Sick Children, Toronto, Canada;Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, Canada;SickKids Research Institute, Hospital for Sick Children, Toronto, Canada;SickKids Research Institute, Hospital for Sick Children, Toronto, Canada;Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, Canada;SickKids Research Institute, Hospital for Sick Children, Toronto, Canada;Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, Canada;Division of Gastroenterology, Hepatology and Nutrition, Hospital for Sick Children, Toronto, Canada;SickKids Learning Institute, Hospital for Sick Children, Toronto, Canada;Department of Physiology, University of Toronto, Toronto, Canada;SickKids Research Institute, Hospital for Sick Children, Toronto, Canada;Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, Canada;Division of Gastroenterology, Hepatology and Nutrition, Hospital for Sick Children, Toronto, Canada;SickKids Learning Institute, Hospital for Sick Children, Toronto, Canada;The Wilson Centre, Faculty of Medicine, University of Toronto, Toronto, Canada;

关键词: Patient-oriented research;    Child Health Research;    Education;    Capacity development;   

DOI  :  10.1186/s40900-021-00276-z

来源: Springer

【 摘 要 】

BackgroundThe Canadian Institutes for Health Research launched a national ‘Strategy for Patient-Oriented Research’ (SPOR) in 2011. Patient-oriented research is defined as a continuum of research that engages patients as partners, focuses on patient-identified priorities, and improves patient outcomes. Capacity development is a core element of SPOR. Barriers to patient-oriented research include unfamiliarity with the research process for patients and families and unfamiliarity with the methods of patient and family engagement for researchers.MethodsThe aim of the Patient-Oriented Research Curriculum in Child Health (PORCCH) is to build capacity in patient-oriented research in child health among patients and families, researchers, healthcare professionals, decision-makers, and trainees through a curriculum delivered via a series of interactive online modules (e-learning). A multi-disciplinary, multi-stakeholder steering committee, which included patients and families, guided the development of the curriculum and provided feedback on individual modules. The content, design, and development of each module were co-led by a parent and researcher in an equal partnership.ResultsPORCCH consists of a series of five modules. All modules are interactive and include video vignettes and knowledge comprehension questions. Access to the modules is free and each module takes approximately 30 min to complete. The five modules are: Research 101 (an Introduction to Patient-Oriented Research, parts 1 and 2), Patient Engagement 101 (an Introduction to Patient Engagement in Child Health Research, parts 1 and 2), and Research Ethics 101.ConclusionsPORCCH was developed specifically to overcome recognized barriers to the engagement of patients and families in child health research. The aim of the curriculum is to build capacity in patient-oriented research in child health. The goal is for PORCCH to be a useful resource for all stakeholders involved in patient-oriented research: patients and families, researchers, healthcare professionals, decision-makers, and trainees.

【 授权许可】

CC BY