Macarthur Colin, Walsh Catharine M, Buchanan Francine, Karoly Aliza, Pires Linda, McCreath Graham, Jones Nicola L
SickKids Research Institute, Hospital for Sick Children, Toronto, Canada.
Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, Canada.
Res Involv Engagem. 2021 May 10;7(1):27. doi: 10.1186/s40900-021-00276-z.
The 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.
The 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.
PORCCH 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.
PORCCH 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.
加拿大卫生研究院于2011年推出了一项全国性的“以患者为导向的研究战略”（SPOR）。以患者为导向的研究被定义为一个连续的研究过程，该过程让患者作为合作伙伴参与其中，关注患者确定的优先事项，并改善患者的治疗结果。能力发展是SPOR的核心要素。以患者为导向的研究的障碍包括患者和家庭对研究过程不熟悉，以及研究人员对患者和家庭参与方法不熟悉。
儿童健康领域以患者为导向的研究课程（PORCCH）的目标是通过一系列交互式在线模块（电子学习）提供的课程，在患者和家庭、研究人员、医疗保健专业人员、决策者和学员中培养儿童健康领域以患者为导向的研究能力。一个包括患者和家庭的多学科、多利益相关方指导委员会指导了课程的开发，并对各个模块提供反馈。每个模块的内容、设计和开发由一位家长和一位研究人员以平等的伙伴关系共同主导。
PORCCH由一系列五个模块组成。所有模块都是交互式的，包括视频短片和知识理解问题。模块免费提供，每个模块大约需要30分钟完成。这五个模块分别是：研究101（以患者为导向的研究导论，第1部分和第2部分）、患者参与101（儿童健康研究中的患者参与导论，第1部分和第2部分）以及研究伦理101。
PORCCH的开发是为了专门克服在儿童健康研究中患者和家庭参与的公认障碍。该课程的目标是培养儿童健康领域以患者为导向的研究能力。目标是让PORCCH成为参与以患者为导向的研究的所有利益相关方的有用资源：患者和家庭、研究人员、医疗保健专业人员、决策者和学员。
