ArticleResearch involvement and engagement2021
Development of the patient-oriented research curriculum in child health (PORCCH).
Article in Research involvement and engagement, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed.
- Review
- The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Building capacity for patient-engagement in neuromuscular disease research: A network project.Journal of neuromuscular diseases · 2026Article
- A pre-post evaluation of the Family Engagement in Research Course: does it increase perceived knowledge, abilities, and confidence in family engagement in neurodevelopmental disability and child health research?Research involvement and engagement · 2025Article
- Training and peer-group coaching for pairs of researchers and patient representatives to support continuous two-way learning.Research involvement and engagement · 2024Article
- Enhancing patient-oriented research training: participant perceptions of an online course.Research involvement and engagement · 2024Article
- Benefits, barriers and recommendations for youth engagement in health research: combining evidence-based and youth perspectives.Research involvement and engagement · 2024Review
- Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health.Research involvement and engagement · 2024Article
- Patient, Family, Caregiver, and Community Engagement in Research: A Sensibility Evaluation of a Novel Infographic and Planning Guide.Physiotherapy Canada. Physiotherapie Canada · 2024Article
- Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network.Research involvement and engagement · 2023Article
- Training and capacity development in patient-oriented research: Ontario SPOR SUPPORT Unit (OSSU) initiatives.Research involvement and engagement · 2023Article
- Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research.Research involvement and engagement · 2022Article
- Co-development and Usability Testing of Research 101: A Patient-Oriented Research Curriculum in Child Health (PORCCH) E-Learning Module for Patients and Families.Frontiers in pediatrics · 2022Article
- Article
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Authors and funding
7 authors.
Funding
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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.
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