A journey through public and patient engagement in health research: A road map

 

This interactive “road map” focuses onĀ 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.

 

An image of a map in the background with copy on top. Road map.

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)Ā isĀ about ensuring research is conducted, with, by and for patients.Ā PORĀ involvesĀ active and meaningful partnership with patients, families, and members of the public or community. POR ensuresĀ 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 aĀ Canadian Institute of Health ResearchĀ (CIHR) sponsored initiativeĀ thatĀ involves active andĀ meaningfulĀ participationĀ 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.Ā  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.Ā  We would like to acknowledge and specifically thank Tony L, a patient partner fromĀ Legacy for Airway HealthĀ (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 ofĀ Arthritis Research CanadaĀ and Mel K from the Community Stakeholder Committee; Legacy for Airway Health who all provided invaluable input and feedback.

 

Other versions of this map

Check out a version of this map showcasing Patient Engagement in the Methods Clusters.

This interactive tool is an evolving project. Please send your comments to lfeehan@healthresearchbc.ca