PE-7: How Do I Find People to Involve in my Health Research?

By Carolyn Shimmin

First, a Recap

In one of our previous posts, we talked about the importance of identifying who you want to involve in your research project by asking the following questions:

“Who is affected differently by this health issue?”

Think about things like gender expression, race, socioeconomic status, ethnicity, Indigeneity, culture, ability, sexual orientation, gender identity, immigrant status, age, religion, etc.

“Who has different access to health care services associated with this health issue?”

Think about geographical barriers (i.e. urban/rural) and systemic barriers (i.e. colonialism, racism, sexism, homophobia, ableism, etc.).

“Where are patients at with their health issue?”

People who have recently developed a health condition will likely have a very different perspective than a patient that has had it for years. Some patient partners (including those who have been recently diagnosed, who are dealing with a very difficult condition, or who are at a particularly intense stage of treatment) may not be able to collaborate on a project, but might be interested in consulting or advising from time to time.

“How am I going to ensure that a diversity of perspectives are involved in my research project?”

The best way to determine what participatory approaches will be the most inclusive is to talk with communities and ask how they would prefer to be engaged.

How to Find People to Become Involved

Once you figure out the who, you can then move on to answer how you’re going to find people who may be interested in becoming involved in your research project. Below are a few tips and tricks:

Ask patients and community members (including leaders and Elders) “who is missing from the engagement activity?”

Empowering people with lived experience to engage their peers can be an effective way to overcome certain barriers to participation, such as language and trust.

Go beyond healthcare consumer organizations

Connecting with healthcare consumer organizations is a great way to help not only identify who may be interested in getting involved with a research team, but also connect with staff working at these organizations. They may be able to offer advice on how people with lived experience of a health issue might prefer to be engaged.

You should also think beyond healthcare consumer organizations, reaching out to local community and neighbourhood organizations, women’s organizations, LGBTQ2 resource centres, Indigenous organizations, immigrant and refugee resource centres, etc.

Health care professionals may also be able to connect you with potential patient partners for your project team

However, if the health care professional plays a role on the research team, it is important to use participatory approaches that will enable patient partners to feel they are safe to express their opinion and that their care will not be impacted by their involvement on the research team.

Use different mediums to get your message out

Again, talk to people with lived experience of a health issue about what some of the best ways to reach out to other community members might be. Solutions to connect with potential partners may include: a healthcare consumer e-newsletter, an advertisement in the local paper or on a radio broadcast, starting a Facebook community page, or setting up a table at a local community event.

Make sure your recruitment strategy is balanced and inclusive

Try to involve people with lived experience of a health issue on your recruitment team. Acknowledge that if you are wanting to engage diverse perspectives on a health issue, it may require a multi-pronged recruitment strategy, meeting people where they are at, and taking the time to build trust and relationships with communities.

Keep your message simple and your expectations clear

Using accessible language free of jargon and acronyms, you should briefly describe: the purpose of the research study, the objectives for patient involvement, and the compensation for patient partners. You should also outline training requirements, expected roles, and expectations of partners. It is important to be clear about what the opportunity for patient partners consists of, including how much influence communities will have in regard to decisions in the research process (i.e. if you are looking for input and feedback on research priorities but researchers will have the final say, you shouldn’t promise shared decision-making around research priorities). You should also be sure to give potential research team members a clear timeline and breakdown of the anticipated time commitment for each stage of the research project.

What are some of the ways you connect with potential community partners for your research project?

This is the seventh in an ongoing series of posts by Carolyn specifically addressing patient and public engagement. Links to other posts in the series are 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-5: Purpose of Engaging Patients and the Public
• PE-6: What Influences Someone’s Motivation to Get Involved in 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.