PE-4: Are You Ready for Patient Engagement? Assessing Expectations

By Carolyn Shimmin

Oftentimes I find health researchers have the best intentions when it comes to public and patient engagement. They see the value of having the experiential knowledge of patients, informal caregivers and communities inform their research, but aren’t quite sure where to begin.

In order to better understand at what level your research team is willing to share the decision-making, reputable organizations like the International Association for Public Participation (IAP2), among others, highly recommend doing both an internal and external assessment of expectations and willingness to engage.

Internal Assessment

This means having a bit of a heart-to-heart with your initial research team and assessing the following:

• What is the minimum required level of patient and public involvement for this grant application?
• To what extent does the research team believe that patient and public engagement will improve the outcome of the research?
• What is the potential for patients and members of the public to influence decision-making within the research process?
• What is the likelihood the research team will fully consider patient and public input?
• What resources are likely to be available to support patient and public involvement?

External Assessment

IAP2 also recommends going out and talking with patients, informal caregivers, the public, and community groups before beginning to plan your engagement strategy in order to better understand external expectations and willingness to become involved. This means having a better understanding of things like:

• Previous history of engagement (i.e. some populations have had very negative experiences with researchers in the past and may have hesitations and uncertainties about becoming involved in research again — you must be sensitive and understanding to these realities)
• What inequities (i.e. avoidable and unjust inequalities between and within groups of people) exist in relation to the health issue being researched (remembering to think about the intersecting social and structural locations such as gender, race, ethnicity, Indigeneity, socioeconomic status, sexuality, gender expression, immigrant status, and religion — as well as processes of oppression such as patriarchy, colonialism, capitalism, racism, ableism, and heterosexism)?
• What are the values and expectations of people, families and communities living with the health condition?
• What’s important to patients, informal caregivers, families, friends and communities?
• What level people expect to be engaged in the research project and how they would prefer to be involved?

Going through your internal and external assessment will help you decide the best level at which to involve patients and the public. You might find there is a gap between the expectations of your research team and those of patients and members of the public. For example, your research team may feel comfortable with having a patient and informal caregiver advisory committee, while patients and informal caregivers expect to be full members of the research team. In these cases, there may be opportunities for compromise to satisfy both sides, perhaps by engaging people with lived experience at varying levels throughout the project, or having the advisory committee take on more decision-making powers.

How do you assess whether your research team is ready to engage patients and members of the public in the research process?

This is the fourth in a series of posts by Carolyn specifically addressing patient and public engagement. Find links to the other posts 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-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?

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.