Five Reasons Why We Need Trauma-Informed Intersectional Analysis in Public & Patient Engagement
By Carolyn Shimmin
In 2017, we published an article in BMC Health Services Research titled “Moving towards a more inclusive patient and public involvement in health research paradigm: The incorporation of a trauma-informed intersectional analysis”. This article challenges current conceptualizations of engagement, and calls for a more meaningful and reflexive way of doing things. In this post, we break down the reasons why we need to incorporate a trauma-informed intersectional analysis (say what? don’t worry — we will explain) in public and patient engagement, in true listicle style, though we encourage you to check out the full article and share your thoughts as well.
1. Inclusion of diverse perspectives and voices is a cornerstone of public and patient engagement.
Inclusiveness is a guiding principle of Canada’s Strategy for Patient-Oriented Research (SPOR), the US’s Patient-Centered Outcomes Research Institute (PCORI) and the UK’s INVOLVE.
2. Current conceptualizations of public and patient engagement in health research may actually be excluding certain voices.
In the article, we contend that the concept of public and patient engagement continues to essentialize the identity of “patient” as a homogenous group of people, who need to simply be more engaged by researchers. This denies the reality that peoples’ economic, political, cultural, subjective and experiential lives intersect in a variety of ways. This also means we’re excluding the involvement of people who may not identify as “patients” for a variety of reasons:
- Inability to access the healthcare system because of geography and/or systemic barriers (including racism, colonialism, sexism, classism, ableism, homophobia, and transphobia);
- Living with mental health or substance use issues and being hesitant about identifying as a “patient” due to the stigma attached to these labels;
- Living with the label of an intellectual and/or physical disability, and experiencing continued medicalization (i.e. disability perceived as something that needs “fixing” or to be “overcome”); and
- Refusal to engage with, or prematurely exiting, the health care system because of unresponsive or disrespectful care.
3. The voices being excluded are often those who carry the greatest burden of illness.
There is robust evidence demonstrating the existence of a social gradient in health nationally and on a global scale. This means that social and economic conditions and their effects on peoples’ lives also determine their health, including the risk of becoming ill, the ability to take actions in order to prevent future illness, and the ability to treat illness when it does occur.
Public and patient engagement strategies need to consider both:
- (1) The simultaneous interactions between different social categories that make up social identity including race, ethnicity, indigeneity, gender identity & expression, socioeconomic status, sexuality, geography, age, ability, immigration status, and religion, AND
- (2) The impact of systems and processes of oppression and domination, including racism, colonialism, classism, sexism, ableism, homophobia, and transphobia; to avoid reproducing and propagating health inequities that already exist.
Without these considerations, engagement strategies may privilege certain voices — mainly white, middle-class, educated people, who have relatively fair access to health care; can navigate the system with comparative ease; and feel comfortable with identifying as a patient — over the voices of people who carry the greatest burden of illness, the very voices traditionally less heard in health research.
4. The central goal of intersectional analysis is the inclusion of voices less heard — which is also important for public and patient engagement.
Intersectional Analysis
Intersectionality promotes an understanding of human beings as shaped by the interactions of different social locations (as discussed above). These social locations are considered dynamic, historically grounded, and socially constructed. Interactions between social categories occurs within a larger context of connected systems and structures of power (e.g. laws, policies, governments, media, and public institutions). Interdependent forms of privilege (i.e. unearned advantages) and oppression (i.e. unearned disadvantages) are created, shaped by colonialism, imperialism, racism, homophobia, transphobia, ableism, and patriarchy.
Intersectional analysis understands that inequities are never the result of single, distinct factors. Rather, they result from the intersections of different social locations, power relations and experiences.
“There is no such thing as a single-issue struggle, because we do not live single-issue lives.” — Audre Lorde
Critical & Embodied Reflexivity
In public and patient engagement, intersectional analysis addresses the impact of the complex interplay between systems of power and the formation of identity. Intersectional analysis addresses and pays attention to power — through the practice of critical reflexivity. As we learned previously from Ogai’s Photovoice series, critical reflexivity involves health researchers and patient and public partners examining how their own social locations affect their perspectives, beliefs, behaviours, and understandings of the area of research they are investigating.
In embodied reflexivity we talk about also having an awareness of bodily presence (see Carolyn’s posts on why bodies matter in public and patient engagement and how to incorporate embodied reflexivity). This is important because there is sometimes a juxtaposition created between the socially-constructed (and often falsely identified) ‘failing body’ of the patient/public partner and the researcher’s seemingly ‘vibrant physicality’. Reflexivity practice can illuminate power imbalances in the research relationship, opening up opportunities to actively work on resisting and renegotiating power.
Check out Table 1 in the article for specific reflexive questions teams can work through together in order to build trust and transparency.
5. But wait — we’re not done yet — we still need to address the impact of trauma in health.
Trauma
An important but often overlooked aspect in patient and public engagement is how experiential knowledge shared by patient/public partners may be intertwined with experiences of trauma. Teams must acknowledge that trauma is a widespread, harmful and costly public health issue that can impact an individual’s health, responsiveness to treatment, and ability to access appropriate services (and therefore identify as a ‘patient’).
Moreover, healthcare systems intended to provide services and supports may themselves be trauma-inducing (e.g. coercive practices such as seclusion or restraints in the behavioural health system or invasive procedures in the medical system).
To learn more about trauma-informed approaches in engagement, check out Carolyn’s blog series here: https://medium.com/knowledgenudge/trauma-informed-patient-engagement/home.
What does this have to do with public and patient engagement in health research?
By their very nature, traumatic events set up a power differential where one entity (an individual, event, system, or force of nature) has power over another, and a person’s experiences are shaped in the context of this powerlessness. Thus, in interpersonal interactions — a major component of patient and public engagement — it is critical to ensure that feelings of powerlessness are not reproduced.
Additional questions from Table 4 in the article will help your team to actively resist re-traumatization, through the creation of both physical and interpersonal processes that support the safety of both researchers and public and patient partners.
We recognize that this may be a lot to take in when it comes to public and patient engagement in health research. That’s why we included helpful tables of questions in the full article that can be used by teams to ensure meaningful and inclusive patient and public engagement, and can be built upon one by one throughout the planning, practice and evaluation stages of research.
What are your thoughts? Share with us in the comments or on Twitter @KnowledgeNudge.
About the Author
Carolyn Shimmin (@CarolynShimmin) is the Public and Patient 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.
