PE-6: What Influences Someone’s Motivation to Get Involved in Health Research?

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.

It makes sense that health researchers would have personal, economic and political commitments to the area(s) in which they choose to work. So it shouldn’t come as a surprise that patients and the public who choose to engage in health research have motivations and interests of their own, which can be influenced by any number of variables:

Time and Energy Commitment Required

“Giving back to the community” and “having your voice heard” about a specific health issue may be sufficient motivation for patients and the public if the method of engagement requires a finite amount of time and energy (e.g. a one-time discussion group held over two hours in the evening).

However, the more intense the level of participation (e.g. ongoing engagement on a steering committee and/or research team throughout the entire research process), the more the barriers to engagement increase (e.g. having to find the time and energy between healthcare appointments, raising a family, work, etc.). Consequently, with higher commitment comes the need for increased levels of motivation.

Interest in the Research Topic

It can be quite empowering when the research topic is relevant to the personal journeys and life experiences of patients and the public, and speaks to their values and aspirations. It can motivate them to be more involved, or to stay involved longer.

But when the subject is more abstract — such as reflections on health care policy and services — patients and the public may be less inspired to act (although it may still energize health care professionals and consumer advocates). This difference underscores the importance of engaging patients and the public early in the research process to help set research priorities and shape and clarify the research question.

Participatory Approach Chosen

It is important to understand how people with lived experience of a health issue want to be engaged in health research, and what participatory approach is going to allow them the best opportunity to share their experiential knowledge and be heard. Patients and the public may also really want the opportunity to hear from others who may have had similar or even different experiences than themselves.

The type of participatory approach you choose (which should be chosen in partnership with patients) is integral to ensuring a diversity of perspectives, and that everyone feels included and safe to participate. Participatory approaches could include: a World Café, a series of Study Circles, a Revolving Conversation, or even having patient partners on steering committees and research teams that utilize a participatory decision-making process in their meetings.

Check out our post on our Guide to Methods in Patient and Public Engagement on the resources page of our website to learn more about selecting an appropriate participatory approach.

How the Opportunity is Framed

Taking steps to better understand the perspectives, values and aspirations of patients and the public helps better frame potential engagement opportunities for people interested in becoming involved. For example, “Your involvement in this health research project will:

• Help people and communities living with the health issue;
• Mean giving back to your community ;
• Aid in working towards improving the quality of life not only for yourself, but others as well;
• Assist in improving the quality of care and services not only for yourself, but others; and/or
• Give you the opportunity to contribute your valuable insights and perspectives on this important health topic.”

Note that the research team must fully commit to deliver on how the patient engagement opportunity is framed to potential partners. This framing will set everyone’s expectations on what the research is intended to achieve.

What do you think are other reasons why people with lived experience of a health issue might choose to become involved in health research?

This is the sixth 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-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.