PE-5: Purpose of Engaging Patients and the Public

By Carolyn Shimmin

First, a note: For brevity’s sake, any reference to “patients and the public” is meant to include people with lived experience of a health issue, communities, informal caregivers, families and friends.

One of the top questions I get from researchers is about the recruitment of patients and the public for research teams. Some commonly asked questions include:

• Where can I find patients who would be interested in sitting on a research team?
• What skills and training should they have to partner on a research team?
• What about patients and the public?

Know Why You Seek Engagement

Before researchers even begin to think about who they will involve, they should have a clear understanding of why they will be engaging patients and the public in the research process. This means going beyond simply wanting people’s input, to thinking about:

• What their engagement in the research project is meant to achieve; and
• How they might contribute to decision-making in the research process (i.e. will they have input in research priorities, questions, methods, design, outcome measures, interpretation of findings, dissemination of results, etc.?).

Voices Traditionally Less Heard in Research

The former Canadian Foundation for Healthcare Improvement (now part of Healthcare Excellence Canada) AWESOME Model (p.42) points to another important point: engaging patients and the public in research teams often inadvertently excludes certain groups of people.

So as researchers, we have to be creative in how we address barriers and challenges that may limit the involvement of a diverse group of people. For example, when coming to a consensus as a group over research priorities, we often use Delphi methods or written questionnaires. If you want to engage individuals with low literacy or language barriers, information might need to be presented using visuals or orally to allow everyone to be fully and meaningfully involved.

Another important step before you decide who you want to engage is to ask yourself the following questions:

• What current health inequities exist in the area of health that I am proposing to research?
• Are people living with this health issue affected differently based on any number of factors, known as social locations (e.g. gender identity, race, socioeconomic status, ethnicity, Indigeneity, gender expression, sexuality, ability, religion, immigrant status, etc.)?
• Do people living with this health issue face different geographical and systemic barriers to accessing healthcare services, including: racism, colonialism, sexism, homophobia, ableism, etc.?
• How will I make sure that a diverse group of voices is represented in decision-making around research processes?
• How do you think people with lived experience would prefer to be involved in research, and why? Note: the best way to figure this out is by talking with those you are interested in engaging and the communities around them.
• What challenges do you think need to be addressed in order to make it easier for those living with this health issue to become involved in research? Again, the best way to figure this out is to talk with those you are interested in engaging.

Research of Value to Patients and the Public

Take the time to think through these questions and connect with patients and the public from the very beginning to co-develop your engagement strategy. This will position your research team for success, and allow opportunities and spaces for voices traditionally less heard in health research to have a say in matters that affect them most. This, in turn, means research that is truly reflective of the needs of patients and the public.

How do you prepare and plan for patient, caregiver, community and public engagement?

This is the fifth in an ongoing series of posts by Carolyn specifically addressing patient and public engagement. Links to other posts in the series are found below:

• PE-1: What is Patient Engagement Health Research?
• PE-2: The Value of Patient and Public Involvement in Health Research
• PE-3: The Levels of Patient and Public Involvement
• PE-4: Are you Ready for Patient Engagement? Assessing Expectations
• 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 Patient and Public 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.