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Development of the patient-oriented research curriculum in child health (PORCCH)
Colin Macarthur1,2, Catharine M Walsh3,4,5,6,7, Francine Buchanan8,9
1SickKids Research Institute, Hospital for Sick Children, Toronto, Canada. colin.macarthur@sickkids.ca.
Insights
The Patient-Oriented Research Curriculum in Child Health (PORCCH) offers free online modules to build capacity in patient-centered research. This initiative addresses barriers for patients, families, and researchers in child health studies.
Area of Science:
- Child Health Research
- Patient Engagement
- Capacity Development
Background:
- The Canadian Institutes for Health Research (CIHR) established a Strategy for Patient-Oriented Research (SPOR) in 2011.
- Patient-oriented research emphasizes patient partnership, priorities, and outcomes.
- Barriers include limited research process knowledge for patients/families and engagement methods for researchers.
Purpose of the Study:
- To build capacity in patient-oriented research within child health.
- To address barriers faced by patients, families, researchers, and decision-makers.
- To provide accessible training through an e-learning curriculum.
Main Methods:
- Developed the Patient-Oriented Research Curriculum in Child Health (PORCCH).
- Utilized a multi-stakeholder steering committee, including patients and families.
- Co-led module development by a parent and researcher in equal partnership.
Main Results:
- PORCCH comprises five interactive online modules with video vignettes and comprehension questions.
- Modules cover Introduction to Patient-Oriented Research, Patient Engagement, and Research Ethics.
- Access to the free modules is available online, with each module taking approximately 30 minutes.
Conclusions:
- PORCCH was specifically designed to overcome barriers in child health research engagement.
- The curriculum aims to enhance capacity in patient-oriented research for all stakeholders.
- PORCCH serves as a valuable resource for patients, families, researchers, healthcare professionals, decision-makers, and trainees.
Background:
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.
Methods:
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.
Results:
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.
Conclusions:
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.
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