PE-1: What is Patient Engagement Health Research?

By Carolyn Shimmin

The concept of patient engagement in health research has received growing recognition over recent years, both nationally and internationally (in places like the United Kingdom and the United States). But what exactly does it mean? The Canadian Institutes of Health Research (CIHR) defines patient engagement as “the meaningful and active involvement of patients in the governance, priority setting, [and] conducting of research and knowledge translation.” In the UK, the National Health Services uses the term “patient and public involvement” and defines it more simply as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”

What it boils down to is patients and/or members of the public moving beyond the role of research participants or subjects and taking an integral spot at the study team table as full partners or co-investigators in health research.

The core belief underpinning public and patient engagement is that greater involvement of people with lived experience of health conditions in research will lead to improved health outcomes and an enhanced health care system. Proponents of public involvement contend that it will increase the quality, appropriateness, acceptability, transparency and relevance of research — ensuring health research addresses issues of importance to people, families, and communities living with health conditions.

Guiding principles of Patient Engagement

Some of the important guiding principles of public and patient involvement in health research include:

• Inclusiveness (i.e. integrating a diversity of public and patient perspectives, with research reflecting these contributions);
• Support for public and patient partners to be able to fully contribute (i.e. creating safe environments, anti-oppressive and trauma-informed approaches, appropriate training, education, and compensation);
• Mutual respect and partnership (i.e. the value of experiential knowledge is recognized by all research team members);
• Co-building (i.e. public, patients, researchers and practitioners work together from the beginning to identify problems and gaps, set priorities for research, and collaboratively produce and implement solutions);
• Co-learning (i.e. patient and public partners learn more about the research process and researchers learn more about patient-centred engagement);
• Reciprocal relationships (i.e. shared power and decision-making); and
• Transparency, honesty and trust (i.e. open communication, reflexive practice, and conflict resolution).

Types of Public and Patient Engagement

Patients and/or members of the public can be involved in research as co-investigators — engaged in creating and running projects. They can also be involved as research team members in the role of advisors or experts. People with lived experience of health conditions and their informal caregivers can also be engaged in research on advisory groups including: panels, community boards, steering committees, and executive committees for the project. In addition to these in-person interactions, they can also be asked a set of questions through surveys, questionnaires or opinion polls to provide input on the decisions surrounding the research process (i.e. research priorities, questions, methodologies, design, data collection approaches, interpretation of results, dissemination, etc.).

Public and Patient Engagement is Not…

Just like it is important to know what patient engagement is, it is also important to understand what it is not. When we talk about patient and public involvement in health research we are NOT referring to:

• People being recruited to a clinical trial or other research study to take part in the research;
• People completing a questionnaire or participating in a focus group as part of a research study;
• Science festivals open to the public with debates and discussion on research;
• Open day at a research center where members of the public are invited to find out about research;
• Raising awareness of research through media such as television programs, newspapers and social media; and
• Dissemination to participants, colleagues or members of the public regarding findings of a study.

Though these types of activities may be part of your KT dissemination plan, it wouldn’t be considered patient or public engagement because it is a one-way interaction where researchers are presenting their findings to the public versus a two-way collaborative dialogue between patients and researchers around the research process itself.

What it All Boils Down To

One of the best ways, I find, to think about public and patient involvement in health research is:

People, informal caregivers and communities with lived experience of health conditions having a say in decision-making about the research process — which is to say decisions about the research priorities, questions, outcome measures, design, methodology, data collection approaches, interpreting results, dissemination methods, etc.

The level of influence patients and the public have over decision-making with regard to the research process is determined by the level of involvement, which will be discussed in a future blog post.

Tell us what you think

• How do you involve patients and members of the public in your health research?
• What questions do you have about involving patients and members of the public in your health research?

This is the first of a series of posts by Carolyn specifically addressing public and patient engagement. Links to the entire series are found below:

• PE-2: The Value of Public and Patient Involvement in Health Research
• PE-3: The Levels of Public and Patient Involvement
• PE-4: Are you Ready for Patient Engagement? Assessing Expectations
• PE-5: Purpose of Engaging Patients and the Public
• PE-6: What Influences Someone’s Motivation to Get Involved in Health Research?
• PE-7: How do I Find People to Involve in My Health Research?
• PE-8: Five Point Checklist When Planning for Patient Engagement

About the Author

Carolyn Shimmin (@CarolynShimmin) is the Public and Patient Engagement Lead at the George & Fay Yee Centre for Healthcare Innovation (CHI). Her experience includes stakeholder engagement, research, writing and reporting on various health policy issues including mental health, addictions, trauma and the sexual exploitation of children and youth. Areas of interest include patient engagement, lived experience research, knowledge translation, trauma-informed approaches, intersectional analysis, and poststructuralist queer theory.