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.

  • Develop an ongoing relationship rather than just emailing community partners to do a study and then expect them to accommodate you. We know that this is not always possible but definitely a factor in our decision to work with external researchers.
  • Work collaboratively with agencies to determine what they would find helpful as opposed to going in with a set agenda that works for your own research interests.
  • Avoid stigmatizing and reductive language about the people the organization serves.
  • Make sure you report back the findings to the agency, but please do so in a way that does not make it sound like you are reporting something they have no knowledge of because they live and breathe it every day.
  • Researchers must have a trauma-informed approach to collecting data—understanding what the clients have been through, continue to go through and work to be sensitive and understanding but not condescending.

Recommended by Dr. Amanda Noble, Manager, Research and Evaluation, Covenant House Toronto

This resource focuses on engaging patients and the community under the umbrella term “public” as defined on p. 3.
Note: In the United Kingdom, the term public involvement is equivalent to patient engagement in Canada.

This resource refers to patient and public involvement (PPI) and states that PPI is not about having patients or members of the public as research participants and defines who “patients and the public” are.

Sections to consider: “Who are Patients and the Public; p. 6” and “What do I call people who I involve in; p. 8”.

A framework for what good public involvement looks like. The six standards are: Inclusive Opportunities, Working Together, Support and Learning, Governance, Communications, and Impact.

Indigenous Community Research Partnerships is an open-access online training resource developed to educate researchers about respectful research partnerships with urban, rural or remote Indigenous communities.

Section to consider: “Results: Four components of Indigenous patient engagement in research; p. 5”

An article about best practices in patient involvement, including an example from the European Union. Five key principles for the success of the patient involvement group are presented: involve early, involve deeply, have patients’ feedback on project progress, include patients in dissemination and help patients convey their own stories.

Includes easy-to-follow guides and tools for planning, budgeting and conducting trauma-informed and inclusive patient and community engagement activities.

References for having an inclusive communication and avoiding stigmatizing language when engaging patient and community partners.

The workshop report includes learnings from a variety of methodological studies that involved patient engagement.

Section to consider: “Foundational framework summarizing principles and best practice activities supporting patient stakeholder engagement in research; Fig. 2”.

This commentary focuses on the importance of centring the research participants instead of centring researchers (easier said than done).

Sections to consider: “Authors’ Suggested Strategies to Improve Working Relationships Between Academic Health Centers and Their Partners in Community-Engaged Research; Table 1”.

Developed by CAMH researchers, this article provides guidelines for academic researchers to make youth engagement a key tenet of their youth-oriented research initiatives.

Core outcome sets (COS) are lists of consensus-determined outcomes to be measured and reported in all clinical research studies within a disease area. In this paper, researchers and patient partners provide a resource for COS developers to meaningfully and effectively engage patients and families.

This guidance was designed to help researchers and patients develop research partnerships in the design or conduct of research – a process known as patient-engaged research. This kind of research is similar to community-engaged participatory research. However, patient-engaged research also brings the living or lived experiences of patients to the research activity.

Information on how to provide fair compensation to patients and public partners, reimburse for meeting and travel-related expenses, and other costs.

A resource manual for researchers on conducting community-engaged and translational research.
Sections to consider: Topics 9 and 13

A case study that provides detailed costing information about community engagement plans. Useful for planning budgets, and justifying them in grant applications.

Section to Consider: Compensation, p. 9

This resource was developed to provide guidance on engaging people with lived experience in a meaningful and effective manner. It provides strategies and resources to help direct researchers and committees in their engagement work.

Two-Eyed Seeing refers to learning to see from one eye with the strengths of Indigenous knowledges and ways of knowing, and from the other eye with the strengths of Western knowledges and ways of knowing … and learning to use both these eyes together, for the benefit of all.

This guide shares racist research systems and practices, followed by resources for mitigating those problematic systems and practices.

GRIPP2 (short form and long form) is the first international guidance for reporting of patient and public involvement in health and social care research. This document focuses on reporting, and not necessarily doing patient and community engagement.

The purpose of this workbook is to facilitate high quality partnerships between researchers and patient partners undertaking research projects together by presenting guidance for research project teams to plan their activities.

A wide range of tools to assist health system stakeholders in the evaluation of patient and public engagement initiatives, both in health research and in health care.

This document identifies core principles of community engagement and describes a framework for informing and supporting programs, leaders and teams in their community engagement activities.

The ODPRN has developed training modules for students and patients new to drug policy research in Ontario. This online training aims to provide a high-level understanding of drugs, drug policy, patient-oriented research, and methodological concepts.

Sections to consider: “Chapter 1: On community-based participatory research” and “Chapter 3: Critical issues in developing and following CBPR principles”.

  • Patient Partner Forums:

Patient Advisors Network
Ontario Health Patient and Family Advisors Network
The Beryl Institute

 

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