28 Methods of Patient and Public Engagement: A Guide
Patient and Community Engagement
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Overview
Active and meaningful patient and public engagement can occur at all phases and stages of research. It’s never too late (or too early) to start engaging people with lived experience in making decisions about your health research project or program. This guide will help you explore options for participatory approaches and engagement methods at various stages of research, and various levels of patient and public partner involvement.
What is Patient and Public Engagement in Health Research
Patients, informal caregivers, families, friends, communities, and members of the public with lived experience of health conditions having a say in research decision-making as patient and public partners in research.
How to Use This Participatory Methods Tool
This tool was developed through process mapping of various participatory approaches to the stages of the research process. The purpose of this tool is to allow research teams to explore potential participatory approaches/ engagement activities for various stages of the research process. Each approach is assigned a number, and mapped to the various stages of research and levels of engagement described below. Some approaches may be useful for more than one stage of the research process, or more than one level of engagement. Descriptions and resources for each approach are included.
Engagement at Every Stage of Research
| Identifying & Prioritizing | Determining research priorities, selecting research questions, and/or choosing outcome measures of importance to people with lived experience of a health condition |
| Research Design | Planning the research study, including methods for recruitment and data collection that are sensitive and appropriate to the needs of people with lived experience |
| Development of Grant Proposal | Preparing a funding application to fund the research project or program |
| Preparation for Execution | After funding has been received, preparing to recruit and collect data |
| Data Collection | Conducting the research, through qualitative, quantitative or mixed methods approaches |
| Data Analysis | Analyzing and interpreting research findings in the real-world context of the lives of people with lived experience |
| Dissemination | Determining how and with whom to share the research findings |
| Implementation | Applying research findings in healthcare service and delivery |
| Evaluation | Determining the success of specific aspects of research (including patient and public engagement), or the overall research project or program |
Levels of Engagement
The level of engagement refers to the amount of involvement and power that patient and public partners will have in actually making decisions about the research process.
A ‘low’ level of engagement, the primary goal at the consult level of patient and public engagement is to obtain feedback or input on one or more research decisions. Decision-making power about the research lies entirely with researchers.
A ‘moderate’ level of engagement, the primary goal at the collaborate level of patient and public engagement is to actively partner with patient and public partners on one or more research decisions. Decision-making power is shared between researchers and patient and public partners.
A ‘high’ level of engagement, the primary goal at the patient/public-directed level of patient and public engagement is for patient and public partners to actively control, direct, and manage the research process. Decision-making power lies entirely with patient and public partners.
The 28 Methods of Engagement
Download the PDF for details about each method of engagement
- Advisory Group
- Appreciative Inquiry Process
- Charrettes
- Citizen Juries®
- Comment Forms
- Conversation Circles
- Deliberative Polling® Process
- Delphi Process
- Dialogue Technique
- Digital Storytelling
- Discussion Groups
- Fishbowl Process
- Focused Conversations
- Interviews
- James Lind Alliance
- Nominal Group Technique
- Open Space Meetings
- Participatory Decision-Making
- Participatory Design
- Patient Journey Mapping
- Patient Observation of Existing Services
- PhotoVoice
- Public Meeting/ Town Hall
- Reality Check
- Study Circles
- Surveys/ Questionnaires
- Workshops
- World Café