Abstract
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.
Highlights
The Canadian Institutes for Health Research launched a national ‘Strategy for Patient-Oriented Research’ (SPOR) in 2011
Our group developed the Patient-Oriented Research Curriculum in Child Health (PORCCH) to help patients and families, and other individuals involved in research, learn about patient-oriented research
It is hoped that PORCCH will be a useful resource for patients and families and other stakeholders involved in patient-oriented research in child health
Summary
The Canadian Institutes for Health Research launched a national ‘Strategy for Patient-Oriented Research’ (SPOR) in 2011. The Canadian Institutes for Health Research (CIHR) launched a national ‘Strategy for Patient-Oriented Research’ (SPOR) in 2011 [1]. CIHR defines patientoriented research as a continuum of research that engages patients as partners, focuses on patient-identified priorities, and improves patient outcomes. SPOR comprises five core elements: a) SUPPORT Units (multi-disciplinary research support centres located in provinces and territories across Canada); b) National Research Networks (for example, CHILDBRIGHT a pan-Canadian research network focused on improving outcomes for children with brain-based developmental disabilities); c) Clinical Trials (creation of a Canadian Coordinating Centre and innovative clinical trials initiatives); d) Patient Engagement (enabling patients as equal partners in the research process); and e) Capacity Development. Guiding principles articulated in the SPOR Capacity Development Framework include ensuring that patients have the capability and support to meaningfully contribute to and participate in research, that all participants in patientoriented research receive the proper training and support, and that access to such training and support should be equitable [2]
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