WHAT IS PATIENT-ORIENTED RESEARCH?
Patient-oriented research is research that engages patients as partners, focuses on patient-identified priorities, and improves patient and family outcomes. In patient-oriented research, research is conducted “with” or “by” patients and other relevant stakeholders, rather than “for” them.
WHAT IS PORCCH?
The Patient-Oriented Research Curriculum in Child Health (PORCCH) is a series of interactive, online modules designed to build knowledge and skills for authentic patient-oriented research in child health. The PORCCH modules will be of interest to patients and families, child health researchers, healthcare professionals, and trainees who want to know more about patient-oriented research. The development of each PORCCH module was co-led by a parent/caregiver and a researcher.
The modules were developed using validated teaching and design principles, such as Mayer’s principles of multimedia design, and further refined through usability testing involving a variety of stakeholders in child health research across Canada. All modules include interactive tools, video vignettes, assessment exercises, and links to additional resources for further learning. Although the focus of PORCCH is on patient-oriented research in child health, the principles and practical examples apply to patient-oriented research in general.
Funding for the development of PORCCH was provided by the Ontario SPOR SUPPORT Unit (OSSU), the Ontario Child Health Support Unit (OCHSU), the BC SUPPORT Unit, and CHILD-BRIGHT. Funding for the evaluation of PORCCH was provided by the Canadian Institutes of Health Research (CIHR).
Project Leads
Nicola Jones
Senior Scientist and Staff Physician, The Hospital for Sick Children
Colin Macarthur
Senior Scientist, SickKids Research Institute
Steering Committee
Nicola Jones
Senior Scientist and Staff Physician, The Hospital for Sick Children
Colin Macarthur
Senior Scientist, SickKids Research Institute
Pat Atherton
Director, Training and Virtual Platform, BC SUPPORT Unit
Susan Ball
Managing Editor, AboutKidsHealth, The Hospital for Sick Children
Srdjana Filipovic
Program Manager, Knowledge Translation, The Hospital for Sick Children
Frank Gavin
Citizen Engagement Director, CHILD-BRIGHT
Aliza Karoly
Family Advisor, The Hospital for Sick Children
Clodagh McCarthy
Medical Writer, AboutKidsHealth, The Hospital for Sick Children
Graham McCreath
Clinical Research Project Assistant, SickKids Research Institute
Linda Pires
Research Operations Manager, Canadian Child Health Clinician Scientist Program
Cathryn Schmidt
Multimedia Producer, AboutKidsHealth, The Hospital for Sick Children
Beverley Shea
Clinical Investigator, Knowledge Synthesis, Ottawa Hospital Research Institute
Catharine Walsh
Scientist and Staff Physician, The Hospital for Sick Children
Module Co-Leads
RESEARCH 101
(Parts 1 and 2)
Aliza Karoly
Family Advisor, The Hospital for Sick Children
Colin Macarthur
Senior Scientist, SickKids Research Institute
PATIENT ENGAGEMENT 101
(Parts 1 and 2)
Francine Buchanan
Patient and Family Engagement Coordinator and Family Advisor, The Hospital for Sick Children
Danielle Rolfe
Research Associate, University of Ottawa
Colin Macarthur
Senior Scientist, SickKids Research Institute
