GUIDES AND TOOLKITS
The following guides will be helpful in planning a research project involving patients as partners. Content is updated regularly, so if you have questions that are not addressed by the sections and topics outlined below, please send us an email with your question or suggestions for content.
PERC DEVELOPED GUIDES AND TOOLKITS
1. Building Patient Engagement in Research: A Guide for Research Teams (By: PERC Advisory Board)
2. Toolkit for Patient Partners (By: PERC Advisory Board)
OTHER GUIDES AND TOOLS
1. Demystifying Authentic Patient Engagement- Practical Tips for success (Patient Voices Network)
2. Patient-Researcher Partnerships Module (Canadian Health Experiences Group)
This module contains information to help support patients, caregivers and researchers interested in learning about working collaboratively as partners on research projects. Patient-research partnerships can be beneficial in helping to identify priorities for what gets studied in research, and how. Results from research that engage patients and families are more likely to be relevant to patients’ needs and to improve patient care.
3. Planning and preparation for patient engagement
In Briefing Note 5 of the INVOLVE document, key considerations are offered to help you to plan for patient engagement in research, such as when to approach patients, how to communicate effectively, developing terms of reference for their engagement, and supporting their involvement by addressing practical issues and building their capacity to contribute meaningfully.
4. Getting Started with Patient Engagement- A Guide (Patient Voices Network)
6. On boarding Checklist (Putting Patients First)
7. Participatory Methods Toolkit: A Practitioner's Manual
8. CIHR: Citizen Engagement Handbook
9. Rules of Engagement: Lessons from PANORAMA (The Change Foundation)
10. Should money come into it? A Tool for deciding whether to pay for patient-engagement participants (The Change Foundation)
11. The Community Scholar Program Guidelines (LHIV Innovation Team)
12. Get involved as a Patient and Public Research Partner!
Training is a top priority for the Aging, Community and Health Research Unit (ACHRU).
1. Get involved as a Patient and Public Partner
2. An overview of health and social care research
3. Developing the research plan
4. Collecting data
5. Analyzing data
6. Sharing findings
13. Patient-Oriented Research (POR) Pathways Self-assessment Readiness
Tool For Patients- October 2019 version
14. Patient Engagement Evaluation Tool- August 2018 version
The Public and Patient Engagement Toolkit is a resource designed for health sector practitioners, produced after the completion of a rigorous systematic review of various public and patient engagement evaluation tools. The toolkit comprises of 27 evaluation tools, which are divided based on various levels of measurement, at the organization, patient partner, and project level. The tools are also sorted based on context of engagement, namely health research and health care. Each tool is assessed on scientific rigour, comprehensiveness, patient and public perspective, and usability.
For more information on the toolkit, please click on the button below.
15. Public and Patient Engagement Evaluation Tool (McMaster)
The Public and Patient Engagement Evaluation Tool (PPEET) is 1 of the 27 tools in the toolkit. The tool is structured around four core principles that capture the key elements of quality PPE: i) integrity of design and process; ii) influence and impact; iii) participatory culture; and, iv) collaboration and common purpose. These principles provide the foundation for the evaluation framework and tool, which carefully map each principle onto outcome measures, indicators and sample questions.
The PPEET is comprised of three questionnaires, each aimed at different end users: i) those who participate in PPE activities; ii) those who plan and execute PPE activities within organizations; and, iii) those who create the vision and build capacity for PPE within their organization.
The tool has been pilot tested in two organizations by over 250 participants comprising each of the three respondent groups. Revisions have been made to each of the questionnaires as a result, and the tool is now ready to be launched on a larger scale within the health system. The tool is available in both French and English.
The PPEET Project was the winner of the 2014 IAP2 Canadian Research Project of the Year award.