A Journey Through Public & Patient Engagement in Health Research: A Road Map

Patient-Oriented Research (POR) is about ensuring research is conducted, with, by and for patients. POR involves active and meaningful partnership with patients, families, and members of the public or community. POR ensures health research addresses research questions and health outcomes that matter to patients and aims to improve health care policy, services, and practices.

Patient and public engagement in POR is a Canadian Institute of Health Research (CIHR) sponsored initiative that involves active and meaningful participation of patient and public partners in the governance, funding, conduct, dissemination, implementation, and evaluation of Health Research in Canada.

We created this road map to illustrate how planning and conducting a research study is much like planning for and taking a trip. This could include deciding on preferences or priorities for where to go, how to get to and fund the venture, how long to stay, what places to visit, what resources and support will be needed, and which activities to do at each stop, followed by considering where to go next and reflecting on your experiences.  Having a patient or public partner on a research team is also like having someone coming on the trip who has the personal experiences and knowledge about the places that you will be visiting, Identifying the essential and problematic issues you may encounter, while also helping you understand the cultural and contextual backdrop of the journey you are taking together.  

This road map was developed in collaboration with patient partners.  We would like to acknowledge and specifically thank Tony L, a patient partner from Legacy for Airway Health (Vancouver, BC, Canada). Tony has been involved with the design and build of this interactive road map from the beginning. 

We would also like to acknowledge Alison H and Annette M from the Arthritis Patient Advisory Board of Arthritis Research Canada and Mel K from the Community Stakeholder Committee; Legacy for Airway Health who all provided invaluable input and feedback.