Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis

The concept of patient engagement in health research — defined as the meaningful and active involvement of patients in: the governance; priority setting; conducting; and translation of research [1] — has received growing international recognition over recent years. Patient engagement in health research is driven by the belief that greater involvement of patients throughout the research process (including as co-researchers) will lead to improved outcomes and an enhanced healthcare system, and will improve the quality, appropriateness, acceptability, transparency and relevance of research — ensuring it addresses issues of importance to patients and the public [2‐9].

But the concept of patient engagement is problematic as it negates the very real complexities and context of peoples’ lives. Though it conceptually begins to disrupt the identity of “researcher,” and complicate our assumptions around expertise and knowledge, it continues to essentialize the identity of “patient.” When approaches and methodologies are created based upon a definition of “patients” as a homogenous group who need to simply be more “engaged” by health researchers it denies the reality that individuals’ economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways. It also excludes the involvement of individuals who may not identify as “patients” for a myriad of reasons — people who are unable to access the healthcare system because of geography and/or systemic barriers (including racism, colonialism, sexism, classism, ableism and heterosexism); individuals living with mental health or substance use issues who may be hesitant in taking up the identity of patient due to the associated stigma attached to such a label; and people who refuse to engage or prematurely exit the healthcare system because of unresponsive or disrespectful care. Also of importance around the essentialization and categorization of patients, are individuals living with the label of intellectual and/or physical disability who have experienced continued medicalization and objectification (e.g. disability conceptualized as something in need of fixing or to be overcome) as a means to regulate and discipline non-conformist bodies (i.e. objectified by the medical gaze, the oppression then internalized and made manifest through self-regulation and policing derived from feelings of shame and guilt) [10, 11].

Substantial and robust evidence points to the existence of a social gradient in health, meaning social and economic conditions and their effects on people’s lives determine: their risk of illness; the actions they are able to take in order to prevent themselves from becoming ill; and treating illness when it does occur [12‐14]. For example, cardiovascular disease mortality in Canada is highest among those in the poorest income group and as income increases, mortality rate decreases [15‐17].

It is also important to consider what is known as the inverse care law — the principle that the availability of good medical or social care tends to vary inversely with the needs of the populations served [18]. This is based on the theory that market forces influence the distribution of services more strongly than population need. For example, in Canada obstetrical services are provided where they are most efficient and profitable rather than on the basis of need alone – so optimal allocation of limited obstetrical services in Canada dictates that services are concentrated in areas with the largest populations (i.e. large urban centres). This may disadvantage women living in rural and remote areas as well as their families [19]. A study on maternal health [20] discussed the problematic nature of allowing childbirth research priorities to be determined by the vociferous and privileged families living in large urban centres that may end up diverting crucial limited resources away from areas of greater clinical need – pointing to the need for inclusive practices in engagement that involves individuals who may face a number of barriers to access to healthcare, including geographical and systemic.

The social gradient to health as well as the inverse care law make evident that patient engagement strategies and approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia), risk excluding the involvement of individuals who often carry the greatest burden of illness — the very voices traditionally less heard in health research.

The roots of patient engagement originate from the world of HIV/AIDS research, [21] as well as the disability movement that coined the phrase, ‘Nothing about us without us’. It grew out of a sense of democratic purpose – that people who are affected by research have a right to have a say in what and how publicly funded research is carried out. But there has been a shift in recent years to conceptualizing the involvement of patients in health research as either a means towards better personal health decision-making (i.e. the involvement of the public will increase their understanding of health research which in turn will strengthen their ability to make good health decisions for themselves and their families) [22] and/or toward enhancing research (i.e. the involvement of patients in health research will improve the quality, transparency, relevance and accountability of research) [23]. This change in thought and conceptualization risks a top-down approach that centres on the primacy of researchers’ needs over the needs of communities; in turn replicating, reproducing and reconstituting already existing inequities by privileging certain voices — mainly white, middle-class 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 others [24].

But what if we were to reframe the central goal of patient engagement in health research as a matter of health equity and social justice? Similar to community participatory research approaches, [25] used mainly in the social sciences, only further expanding where these participatory frameworks often leave off by addressing the impact of the complex interplay between systems of power and formation of identity of both researchers and patient co-researchers. And instead of the term patient engagement we would encourage the use of the term public involvement (often used in the UK and Australia with regard to engagement in health research activities) or the involvement of people with lived experience, in order to highlight the need for a variety of voices and perspectives in health research. Also instead of patient co-researcher, we would be in favour of using the term public research partner which helps to underscore the partnership and relationship-building aspect necessary in any engagement approach. We argue that this would in turn: firstly, expose spaces and opportunities for potential resistance and resilience when it comes to intersubjective power relations effectively present in all engagement activities; secondly, reveal the truly transformative nature of collaboration in health research; and thirdly, aid to improve health outcomes of ALL while also paying attention to the reduction of health inequities.

Therefore, if one of the primary principles behind patient engagement in health research is inclusivity — and the key driver is to improve health outcomes and enhance the healthcare system — we would argue that a public involvement in health research strategy must incorporate a trauma-informed intersectional analysis. This will ensure that health inequities are not simply reiterated, reconstituted and reproduced through involvement approaches and methodologies that are meant to make certain that issues of importance to those living with complex health needs — and this includes the social determinants of health — are being addressed.

Historically speaking, the concept of intersectionality emerged from a myriad of theoretical groundings including: US Black feminism; Indigenous feminism; third world feminism; and queer, poststructuralist and postcolonial feminism [26‐33]. The term itself was first officially coined by Kimberlé Crenshaw [26] in 1989. Intersectionality promotes an understanding of human beings as shaped by the interactions of different social locations or categories ― for example, race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, migration status, and religion. It is important to remember that from an intersectional perspective, social categories are considered: dynamic; historically grounded; socially constructed; and working on both the micro and macro structural levels [34, 35]. Interactions between social categories occur within a larger context of connected systems and structures of power (e.g. laws, policies, governments, media, and public institutions). Through these processes, interdependent forms of privilege and oppression shaped by colonialism, imperialism, racism, homophobia, ableism and patriarchy are created. To put it more simply, prominent intersectional theorist, Olena Hankivsky [36] writes,

According to an intersectionality perspective, inequities are never the result of single, distinct factors. Rather they are the outcome of intersections of different social locations, power relations and experiences. (p.2)

A central goal of intersectionality is the social inclusion of voices traditionally less heard, including populations often ignored, excluded and/or objectified — which is also key to the concept of public involvement in health research [37]. This is achieved by various means including conceptualizing social categories as interacting with and co-constituting one another to create unique social locations that vary according to time and place (this is often visualized as an oscillating web, where there are spaces and opportunities for renegotiation and resistance to power) [38]. Intersectionality involves a multi-level analysis that endeavours to understand the effects between and across various levels in society including: macro (i.e. global and national-level institutions and policies); meso (i.e. provincial and regional-level institutions and policies); and micro levels (i.e. community-level, grassroots institutions and policies as well as the individual or ‘self’). It focuses on the intersecting processes by which power and inequity are produced, reproduced and actively resisted across levels of structure, identity and representation [39, 40].

An important but often overlooked aspect in the practice of public involvement in health research is the recognition that the experiential knowledge of the public often sought out by researchers in involvement activities may be intertwined with experiences of trauma. For example, evidence shows that many patients in primary care settings have significant trauma histories which have an impact not only on their health but also on their responsiveness to health interventions [41‐43]. Experiences of trauma may also impact an individual’s ability to access appropriate healthcare services and hence to identify as a patient.

Embedded in any public involvement in health research practice must be the recognition that trauma is a widespread, harmful and costly public health issue. It occurs as a result of violence, abuse, neglect, loss, disaster, war and other emotionally harmful experiences. Trauma is often seen as an almost universal experience of people living with mental health or substance use issues [44].

Moreover, there needs to be an acknowledgement that healthcare systems that are intended to provide services and supports to individuals may be trauma-inducing. For example, the use of coercive practices, such as seclusion or restraints, in the behavioural health system or the use of invasive procedures in the medical health system can be re-traumatizing to individuals who may have already experienced significant histories of trauma before entering the system. The same can be found in areas such as dental health, where individuals who have been victims of torture and may have experienced significant trauma to the mouth — including First Nations peoples in Canada who received dental care without anesthetics in the 1960s — may require special additional supports due to fear of contact by those in the health care profession that they do not know.

The pervasive and harmful impact of traumatic events on individuals, families, caregivers and communities and the unintended but similarly widespread re-traumatizing of individuals within our public institutions and service systems — not only healthcare systems but also education systems, corrections systems, child welfare systems, government interactions, etc. — makes it necessary for any public involvement in health research practice to involve a trauma-informed approach.

Once more, there needs to be an understanding that trauma does not live solely in the realm of the public research partner who is being asked to share their experiential knowledge but also for the researcher themselves. Evidence shows that in some instances, past experiences of trauma may indeed be a driving motivator for certain researchers in the work they do, exemplified by the wounded healer paradigm [45] often discussed in the field of behavioural health sciences. In addition, even in areas of research where the researcher may not have directly experienced the health conditions being investigated, for example in the field of gerontology, stories shared by public research partners may in time be researchers’ own [46]. It is a reminder that researchers may have a personal connection with hopes and fears expressed by public research partners, and that stories of abuse, loneliness, racism, sexism, etc. do not occur in a vacuum and are likely to have an impact on both researchers and public research partners.

Traumatic events by their very nature set up a power differential where one entity (whether an individual, an event, a system or a force of nature) has power over another. An individual’s experience of these events or circumstances are shaped in the context of this powerlessness and feelings of humiliation, guilt, shame, betrayal or silencing often shape the experience of this event. It is important that in interpersonal interactions — something that plays a very large role when it comes to public involvement in health research — that these feelings of powerlessness are not reproduced or reconstituted in any way.

According to the U.S. Department of Health and Human Services Substance Abuse and Mental Health Services Administration’s guidelines [47] a trauma-informed approach includes: creating methodologies that recognize the widespread impact of trauma; understanding potential paths of recovery; recognizing signs and symptoms of trauma; and seeking to actively resist re-traumatization through the creation of both physical settings and interpersonal processes that support safety for both researchers and public research partners [47‐49].

By ensuring that an intersectional analysis within a public involvement in health research framework is trauma-informed, both researcher and person with lived experience may find common ground and the process of ‘othering’ (i.e. “researcher” vs. “public research partner”), that may ostensibly limit the inclusivity of current engagement approaches, is disrupted. This means the instability of the binary categorization of “patient” or “public” and “researcher” is exposed, in turn revealing spaces where power can be resisted and renegotiated ― which not only works to strengthen trust within the researcher/public research partner relationship but also helps to build resiliency on both sides.

In Canada, Australia, New Zealand and the United States, where governments inspired by settler societies dominate, it is important to foreground anti-colonialism and the varieties of Indigenous sovereignty/nationhood aspirations when incorporating a trauma-informed intersectional analysis in public involvement in health research. This involves an examination of the role of colonization, both past and present, in violence against Indigenous peoples. For example, in Canada this would involve consideration of the legacy of the residential schooling system (from the 19th century until 1996, around 150,000 First Nation, Inuit and Metis children were removed from their families and communities and forced to attend residential schools where they were subjected to physical, spiritual, emotional, psychological and sexual abuse) and the 60s scoop (where from 1960 to 1980 thousands of Indigenous children were taken from their families, often without their parent’s knowledge or consent, and fostered or adopted out to primarily white, middle-class families within Canada as well as the United States and Western Europe) within the child welfare system. Clark [50] writes that an Indigenous intersectional analysis should include: 1) an analysis of policy and policy intersections as colonial violence; 2) an anti-colonial gender analysis; 3) a contextualization of individuals within community and family histories; 4) a positioning of agency as central; and 5) an acknowledgement of resistance.

This expanded intersectional analysis is particularly important in a public involvement in health strategy that is seen through a health equity and social justice lens. For example, if we were to look at the intersections of colonialism, racism and sexism in Canada, research demonstrates that Indigenous women in Canada carry a disproportionate burden of ill health and disease, including higher rates of heart disease, hypertension, diabetes, cervical and gallbladder cancer, HIV/AIDS, substance use problems, mental illness and suicide [51‐56]. Evidence shows First Nation women are more likely to die of a treatable or preventable illness [57].

Adding a trauma-informed approach to this analysis, we would also recognize that the overrepresentation of Indigenous children in the child welfare system is not a remnant of the past, but rather a fact that remains an urgent and ongoing challenge facing Indigenous communities across Canada [58]. While the most recent Statistics Canada population estimates suggest that Indigenous people account for slightly more than 4% of the general Canadian population, Indigenous children represent 48% of children in care [59]. In a recent population-based study in Hamilton, Ontario, it was found that of First Nations adults who had experienced involvement of a child protection agency in their own personal care as a child, 49% felt that it had a negative effect on their overall health and well-being [60]. Participants in this study also identified dislocation from traditional lands (29%) and residential school attendance by a family member (34%) as having negative impacts on their health and well-being [60]. The study also found a population prevalence of post-traumatic stress disorder of 34% [61]. This points to the importance of foregrounding anti-colonialism and Indigenous knowledges when incorporating a trauma-informed intersectional analysis in public involvement in health research strategies.

In acknowledging: firstly, the problematic nature of the conceptualization of patient engagement especially with regard to the inclusion of voices traditionally less heard in health research; and secondly how the incorporation of a trauma-informed intersectional analysis might lead to more authentic and meaningful involvement of people with lived experience, their families and communities in health research; the question then becomes how do we bridge the theory to action gap in order to ameliorate engagement practice? We propose a number of ways below in which a trauma-informed intersectional analysis can be integrated into training, practice and evaluation of public involvement in health research. We recognize that the incorporation of a trauma-informed intersectional analysis may be a challenge for some health researchers — this is why you might notice that the tables of questions and considerations in each section below build upon each other, allowing research teams to work at their own pace and level of comfort, gradually implementing over time depending on the phase and stage of the research process. Also of note, for health researchers engaging the general public, the following tables can be easily adapted to the context, allowing for the incorporation of a trauma-informed intersectional analysis in all public participatory approaches.

An important component of an intersectional analysis is the exploration of power. One way intersectionality pays attention to power is through discursive reflexive practice. Reflexivity acknowledges the importance of power at the micro level of the self and our relationships with others, as well as the macro levels of society. It recognizes the multiple truths and a diversity of perspectives, while giving extra space to voices typically excluded from ‘expert’ roles [62].

For researchers, reflexivity is an important practice skill that is central to working ethically in uncertain contexts and unpredictable situations, which can often be the case in the development and building of public research partnerships. Practicing reflexivity requires both researchers and public research partners to commit to ongoing dialogues about implicit personal and professional knowledges and the construction of expertise in academia [63]. It exposes how researchers’ assumptions about social, economic and health problems, and the people who experience these problems, have ethical and practical consequences.

Reflexivity can help to transform the process of public involvement in health research when both researchers and public research partners who are being engaged bring critical self-awareness about the assumptions and ‘truths’ in their work [50]. An example of this includes reflexive practice to help people consider their individual connections to colonization which then helps to facilitate questioning around policy, practices and research (both past and present) that are used in the colonization of Indigenous peoples in Canada [64].

A comprehensive public involvement in health research training for both researchers and public research partners must include teachings around discursive reflexive practice. Adapting from Olena Hankivsky’s Intersectionality-Based Policy Framework [65] as well as SAMSHA’s Guidance for a Trauma-Informed Approach [47] the following types of questions should be considered in public involvement in health research (Table 1).

Any public involvement in health research training that teaches discursive reflexive practice should also take one step further than what is typically involved in an intersectional analysis and include embodied reflexive practice ― looking at how a researcher’s physical presence and performance potentially influences the public research partner’s sharing of their experiential knowledge. This means exploring the role of embodiment in: the construction of particular narratives; the production of knowledge; and specific types of research relationships.

Oftentimes public involvement in health research activities are predicated on the public research partner’s sharing of their personal physical interaction with their environments. There is sometimes a juxtaposition created between the culturally-constructed vulnerabilities of what may be falsely deemed as the ‘failing body’ of the public research partner and the researcher’s sometimes seemingly ‘vibrant physicality’ [66]. A researcher’s insight and awareness into their own physical capabilities and how they interact with the environment could in turn make a critical impact in the engagement process. It also helps to simultaneously challenge, disrupt and trouble the socially-constructed discursive practice of binary categorization of what is deemed as worthy vs. unworthy bodies [67].

What is enhanced by engaging the embodied researcher and public research partner is the possible opportunities present in the intersubjective space within the partnership. The current state of patient engagement in health research neglects the exploration of intersubjective space within difference, even though difference is inevitable and social and political histories such as colonization, migration and residence status — related to power and potential language differences — can create issues that cannot simply be ignored, and must surely be methodologically explored and exposed both to the challenges as well as the possibilities they create.

One of the most important things in discursive and embodied reflexive practice is how it challenges the simple and static constructions of ‘self’ and ‘other’ [68] — which current patient engagement practices tend to avoid, maintaining the differential positioning of researcher and public research partner within the process of research knowledge and production. But in having both researcher and public research partner trained in discursive and embodied reflexive practice before engaging on a research project together, may expose the complex interplay that belies divergent constructions of research roles and personal/social identities that occur during public involvement practice in which multiple identities are performed, negotiated and reconstructed. In precluding the essentialization of researcher and public research partner roles and responsibilities through reflexive practices, we open up spaces where new roles and responsibilities in the production of research knowledge can be explored.