Resource Guide

Preamble

By being meaningfully involved in research, whether through the co-design of studies, the collection of data or the analysis and dissemination of results, patients, caregivers and community members can contribute the knowledge they have gained through lived experience. That experience may come from having lived with a condition and interacted with the health-care system, or from living with various conditions that can impact a person’s access to preventative health care. When done properly, collaborating with patients, caregivers and communities in the design and implementation of research studies can help create the best care experiences for the future.

Unity Health Toronto’s Research community worked together to develop a three-level Resource Guide tailored to any researcher who intends to start learning or expanding their knowledge of equitable patient and community engagement in the design and implementation of research studies:

• Level 1: Learn—introducing patient and community engagement in the design and implementation of research studies

• Level 2: Apply—learning how to implement best practices for equitably engaging patients and community partners in designing and implementing research studies

• Level 3: Transform—learning how to further advance patient and community engagement practices with an equity, diversity and inclusion lens

While these resources are intended to be self-directed, we will augment them with group discussions and sessions to answer questions and advance our practice.

Each self-directed level includes several objectives, recommended resources for each objective, a list of additional resources, and a tracking form for self-learners. We understand that the topic of patient and community engagement in the design and implementation of research studies is constantly evolving. Hence, our Resource Guide will be a work in progress and will be updated as needed.

Level 1: Learn Resource Guide

Intended Audience: The Learn level is appropriate for scientists, trainees and research staff who have not heard of, or have very little exposure to patient and community engagement in the design and implementation of research studies.

Many scientists, trainees and research staff have limited experience in designing (and implementing) research studies in partnership with patients and community partners, and patient and community partners may need additional assistance to fully grasp the details of the scientific methodology. However, patient and community members can contribute immensely. They can provide a wealth of information regarding lived experience, which can help in the process of designing and implementing a research study. In turn, researchers learn about the benefits, challenges, resources and other requirements to ensure an equitable, engaging and respectful dialogue.

Download a print-friendly PDF of Level 1: Learn

Download the Individual Tracking form for Level 1: Learn

Level 2: Apply Resource Guide

Intended Audience: The Apply level is appropriate for scientists, trainees and research staff who have the knowledge and some experience with patient and community engagement in the design and implementation of research studies and want to learn how to implement best practices for engaging patients and community partners in research.

Download a print-friendly PDF of Level 2: Apply

Download the Individual Tracking Form for Level 2: Apply

Level 3: Transform Resource Guide

Intended Audience: The Transform level is appropriate for scientists, trainees and research staff who have experience with patient- and community-partnered research and want to deepen their understanding on how to further advance their patient and community engagement practices with an Equity, Diversity and Inclusion (EDI) lens. This level requires collaborative training with patient and community partners and ongoing practice with an assessment of competency by patient and community partners as well as academic colleagues.

Download a print-friendly PDF of Level 3: Transform

Download the Individual Tracking From for Level 3: Transformation

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The materials are intended for non-commercial use only. No part of the materials may be used for commercial purposes without the written permission of the copyright owner. Unity Health Toronto should be acknowledged when using the materials for non-commercial use.