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), 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

Partners

Modules developed by Pathways

For general inquiries, please contact us.