A journey through public and patient engagement in health research: A road map
This interactive “road map” focuses on patient and public partners on a research team, outlining diverse activities that they could engage in across multiple phases of a health research project.
There is no “correct” or “absolute” way to engage patients and public partners in research; however, there are many different options and opportunities for patients to meaningfully be engaged and make a difference.
The road map below allows you to explore the stages of a research study, and to consider the many ways in which patient and public engagement on a health research team could occur.
Note: For the best visual experience, we recommend that you use a desktop computer for this online tool.
What is patient-oriented research
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.
Why an interactive road map?
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.
Patient partner engagement in this project
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.
Other versions of this map
A french-language version of the road map will be launched in June 2023.
This interactive tool is an evolving project. Please send your comments to firstname.lastname@example.org