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

In patient-oriented research, research teams engage with partners with lived experience, or people with personal experience of a health issue and the health care received. This interactive “road map” focuses on engaging with partners with lived experience 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 partners with lived experience in research. But there are many different ways for patients and communities to make a difference and be meaningfully engaged as partners with lived experience.

The road map allows you to explore the stages of a research study, and to consider the many ways of engaging with partners with lived experience on a health research team.

Note: For the best visual experience, we recommend that you use a desktop computer for this online tool.

How do I use this tool?

The purpose of the road map is to serve as an educational tool, which facilitates informed conversations on patient and community engagement throughout the research process. Each stop includes a brief description of the research stage, examples of how partners with lived experience can be involved, and resources to learn more.

We recommend this road map for people looking for…

• An introduction to engagement in health research.
• A conversation tool to onboard new members to a research team.
• Ideas for ways to engage with partners with lived experience throughout the research process.
• Introductory resources about patient-oriented research (POR).

What is patient-oriented research?

Patient-oriented research (POR) is about making sure that research is conducted, with, by and for patients.

It 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.

Engagement with people and communities with lived experience in POR involves the active and meaningful participation of patient and community partners in the governance, funding, conduct, dissemination, implementation, and evaluation of health research in Canada. It is an initiative led by the Canadian Institute of Health Research (CIHR) under the Strategy for Patient-Oriented Research.

Why a 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. For example, you might decide 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. Once you complete your journey, you might consider where to go next and reflect on your experiences.

Having a partner with lived experience on a research team is much like having someone come on a trip who has the personal experiences and knowledge about the places that you will be visiting. They can identify 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.