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.

© Copyrighted by Unity Health Toronto 2022
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.

 

This initiative would not have been possible without the dedication, support and guidance of the following researchers, trainees and staff. Our special thanks to patient and community partners who reviewed and provided constructive feedback to improve this Resource Guide.

  • Andrew Advani
  • Zahra Bhimani
  • Yvonne Bombard
  • Ann Burchell
  • Kim Connelly
  • Jemal Demeke
  • Enza Di Pasquale
  • Zoe Dodd

  • Michelle Dubinsky
  • Cathy Du Val
  • Anne-Marie Fox
  • Ana Gajic
  • Tara Gomes
  • Mahfam Janbakhsh
  • Sally-Ann Johnson
  • Clara Juando-Prats

  • Janisha Kamalanathan
  • Tayaba Khan
  • Flora Matheson
  • Farah Mawani
  • Patricia O’Campo
  • Charles Ozzoude
  • Janet Parsons
  • Cheryl Pritlove

  • Sakina Rizvi
  • Joanna Sale
  • Christina Salmon
  • Tom Schweizer
  • Maureen Smith
  • Naomi Thulien
  • Andrea Tricco
  • Elaine Zibrowski

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