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

Abstract

Plain English summary Canada launched a national ‘Strategy for Patient-Oriented Research’ in 2011. The aim of the strategy is to improve patients’ health and well being by focusing on research that is important to patients, and by involving patients and families as equal partners in research. 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. Patients and families will learn about the research process, who is involved, and the timelines of a research study. Researchers will learn about the methods used in patient-oriented research and some practical ways to meaningfully engage patients and families in research. The online curriculum includes five modules. The design and development of each module was co-led by a parent and researcher in an equal partnership. Access to the modules is free ( www.porcch.ca ) and each module takes approximately 30 min to complete. The five modules are: a) Research 101 part 1, What is Health Research and Who is Involved? b) Research 101 part 2, Timeline of a Research Study, c) Patient Engagement 101 part 1, Foundations of Patient Engagement, d) Patient Engagement 101 part 2, Patient Engagement in Practice, and e) Research Ethics 101. 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.

Keywords

• Patient-oriented research
• Child Health Research
• Education
• Capacity development