Why Bodies Matter in Public and Patient Engagement in Health Research

By Carolyn Shimmin

In previous blog posts we’ve discussed the need for critical reflexive practice when it comes to public and patient engagement in health research. What this means is that in order to build authentic and meaningful relationships with public and patient partners — which requires trust and understanding — it is essential for health researchers to bring a level of self-awareness that may not have previously existed, including:

• An understanding of how our own personal values, experiences, interests, beliefs and political commitments shape the area of health we research (including what we choose to prioritize in our research, what questions we ask, the way we design our study, the methods we use, the way we interpret the findings, and the way in which we disseminate and implement the findings); and
• An examination of how these values and experiences relate to social and structural locations we personally inhabit (e.g. our gender identity, race, ethnicity, Indigeneity, socioeconomic status, gender expression, age, sexual orientation, immigrant status, religion) as well as larger processes and systems of power and oppression (e.g. colonialism, racism, patriarchy, capitalism, heterosexism, ableism).

In a highly popular guest blog, Dr. Derek Kornelsen from the Ongomiizwin Indigenous Institute of Health and Healing at the University of Manitoba outlined the importance of researchers having a deeper understanding of their own individual connections to settler colonialism before beginning to even think about community engagement. In turn, this understanding can help to build trust and understanding with communities, and facilitate questioning around policy, practices, and research (both past and present) that are used in the colonization of Indigenous peoples in Canada. Similarly, in our article in BMC Health Services Research, we argue that a comprehensive strategy for patient/public involvement in health research must begin with critical reflexive practice. It helps to transform the engagement process when both researchers and public and patient partners bring self-awareness about the assumptions or ‘truths’ in their work.

Embodied Reflexivity

Often, when we discuss critical reflexive practice, we’re actually only talking about one part of the equation: discursive reflexivity — the examination of language and symbolism in relation to systems of power and oppression. But there is another component of reflexivity that is equally important when it comes to patient and public engagement in health research, and that is embodied reflexivity — looking at how a researcher’s physical presence and performance can influence public and patient partners’ sharing of their experiential knowledge, and in turn the production of knowledge. It’s about looking at the materiality and experiences of the body ― the story of your own body as experienced by yourself, as yourself. Oftentimes the way we think about our bodies is in terms of our possibilities for acting in the world. Embodied reflexivity means taking things a step further and exploring our own physical manifestation in the world and how we physically come to be within social interactions. Embodied reflexivity means discovering how our physical presence and performance is involved in:

The Construction of Particular Narratives

A number of theorists have written about how we think, communicate and experience our bodies is produced, policed and reconstituted by social institutions including media, government, medicine, education, laws, etc. Known as social and cultural discourse, it is embedded and emerges out of relations of power, because those who control these institutions control its formation. When it comes to bodies, it is said that social and cultural discourse is re-inscribed upon its surface materiality (e.g. when a baby is born, are they a boy before someone proclaims “It’s a boy!”?). Social and cultural communications about systems of power and oppression are often used to ‘other’ — that is, to create an ‘us’ and ‘them’ ― constructing a binary between bodies that are deemed ‘worthy’ vs. ‘unworthy’.

For example (and these are only a few illustrations), think about how laws, policies, governments, media, and institutions shape the dialogue around:

1. Illness, dis/Ability, and aging: in terms of “failing bodies” in need of fixing (e.g. the continued medicalization of people who may be differently abled).
2. Racialized bodies: as spaces where violence can occur with impunity (e.g. the ongoing crisis of missing and murdered Indigenous women in Canada; stories of police harassment and murder of people of colour).
3. Gendered bodies: as spaces in need of constant policing (by self and others) in order to continue to uphold the illusion of a binary between man and woman (e.g. rape culture, which insists on blaming women for the sexual violence perpetrated upon them by how they dress, present, and perform within their bodies; the medicalization of transgender or non-binary bodies through the creation of the label of gender dysphoria disorder in the Diagnostic and Statistical Manual of Mental Disorders used by mental health clinicians).
4. Differing body sizes: as culturally and symbolically out of bounds and unable to conform to neoliberal rationalities of thin, ‘healthy’ citizenship (e.g. stigma associated with the label of obesity attached to unrelated character attributes such as “lazy” or “lacking willpower”)

What does this have to do with public and patient engagement in health research? Frequently, involvement in health research is based on public and patient partners sharing their experiential knowledge with researchers in order to help inform research decision-making. This includes patient partners disclosing experiences of their personal physical interactions with their environments. But this imparting of knowledge may be made in a context that contrasts socially constructed ideas of vulnerability and what may be falsely considered the ‘failing body’ of the public or patient partner against the researcher’s sometimes seemingly ‘vibrant physicality.’

The Production of Knowledge

When researchers have insight and awareness of their own physical presence and how they interact with the environment, it can make a significant impact on the engagement process. Once researchers and public and patient partners begin to collaboratively work towards challenging and disrupting the socially constructed binary categorization of what is deemed as ‘worthy’ vs. ‘unworthy’ bodies — by being aware of how their own body plays a role in the interactions of teams — then they can co-create research that works to dismantle the normative discourse that seeks to ‘other’ people. By doing so, teams in turn challenge the ‘othering’ that can happen between researchers and public and patient partners in traditional engagement approaches, and begin to create spaces where mindful interactions can occur ― ones based on the principles of compassion, dignity, respect, trust, empathy and two-way sharing of knowledge.

Specific Types of Research Relationships

Research shows that trust is built between two people through the incremental and mutual sharing of vulnerabilities. This means addressing the sometimes silent ways in which our bodies can be imbued with power and privilege by systems of oppression and domination. Addressing the way in which bodies may silently impose power (e.g. the “manspread” that encroaches on another team members space; the unearned advantages associated with whiteness), and bringing this to light, means working to ensure embodied silences cannot negatively affect research relationships.

Learn more in the video recording of our Lunchtime Learning Series on Why Bodies Matter in Public and Patient Engagement: https://youtu.be/vIXg3m4g7Ug

In Part 2, we discuss ways in which health researchers and public and patient partners can begin to integrate embodied reflexivity in engagement in health research.

What are your thoughts? Share with us in the comments or on Twitter @KnowledgeNudge.

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.