The role of grassroots community organizations in transforming healthcare systems to achieve health equity

Introduction

It took two major events in 2020 to jolt healthcare systems around the world and for health leaders to acknowledge the vast disparities and inequities that have harmed many racialized and marginalized people for decades. The COVID-19 pandemic caused a seismic shift in people’s daily lives in March 2020 as they were suddenly forced into social and physical isolation and had to distance themselves from anyone outside of their immediate household.

This upheaval was followed in May 2020 by the killing of George Floyd by a police officer in the United States, tipping the already heightened emotions caused by the pandemic over the scale. ¹ The images of the brutal killing of an unarmed Black man playing over and over again on television and social media resulted in marches for social justice around the world and an outpouring of anti-Black racism statements from corporations, governments, and non-governmental groups. Many businesses created Diversity, Equity, and Inclusion (DEI) policies and appointed DEI managers to show they were taking action to tackle racism, if only to appease their conscience. The actions taken were no different than what were already being done. It was only after grassroots community organizations became engaged at the decision-making tables that there was significant movement among marginalized populations which resulted in reducing the spread of the COVID-19 virus.

The community leaders led the way in finding innovative solutions to the hesitancy of racialized and marginalized groups, encouraging and mobilizing community members to get tested and take the COVID-19 vaccines. ² They challenged healthcare leaders and government officials to do more than just talk about dismantling systemic, structural, and institutional racism. They advocated for more equitable access to decent healthcare services for all and developed roadmaps to help institutions, corporations, and organizations to create meaningful change. This article examines some of the root causes of deep mistrust that racialized and underserved populations have for the healthcare system, the role of grassroots organizations in breaking through the barriers, and recommends opportunities that health leaders should take to transform systems that could lead to health equity for all.

Systems response

The convergence of these two incidents exposed long-standing structural disparities and inequities that thwarted efforts to contain and stop the spread of the deadly COVID-19 virus. The response of the government and healthcare officials at the onset of the pandemic was to pronounce systems-wide directives expecting a singular response from everyone. This strategy was soon realized to be ineffective as thousands of individuals became infected, overwhelming hospitals and Intensive Care Units (ICUs), and as the death toll climbed, especially among the elderly and most vulnerable. Patterns soon emerged indicating that certain sectors of the community were more susceptible to contracting the virus, and it was not just those who were ailing.^3,4 Figure 1 provides data from the Region of Peel indicating that racialized populations were the most negatively affected by the virus. This was indicative in a myriad of ways: higher rates of virus infection, having to work in precarious jobs without adequate personal protective equipment, loss of jobs at a higher rate than the average, increased food insecurity and increasing mental health issues, ⁵ which led to the region being named as the COVID-19 hotspot in Ontario.^6,7OPEN IN VIEWER

Compounding the situation was that some Canadian government officials’ response to the killing of Floyd was to distance themselves and declare there “was not the same systemic, deep roots of racism” in Canada as there was in the United States, raising an outcry from Black communities and deepening the mistrust they already felt. ⁸ However, as the Black Lives Matter protests continued, provincial, regional and local governments made public declarations denouncing anti-Black and other forms of racism such as the Region of Peel’s motion of June 11, 2020, affirming their “commitment to address systemic discrimination by supporting policies and programs that address the inequities that the [B]lack community and other marginalized groups continue to experience within Peel.” ⁹ This was especially significant because within the first five months of 2020 there were four shootings of racialized people in the Region of Peel by Peel Regional Police resulting in three deaths.^10,11

Centuries of inequities

The impact of these long-standing inequities could no longer be ignored. Officials were forced to admit the inequities were directly linked to structural, systemic, and institutionalized racism, embedded through centuries of slavery, colonialism, and residential schools. ¹² The historical mistreatment of Black, Indigenous, and other racialized groups had, for the most part, been ignored, creating the disparities and inequities that became evident. The tendency is to blame the individual for the deficient service they receive and their lack of quality care. There was a reluctance to admit that racism was a major cause of the inequities, even though racism as a social determinant of health was acknowledged in the 19^th century. ¹² Systemic and structural racism are so embedded in policies, practices and procedures—in fact, in the psyche of people including racialized groups—that it is often assumed that the way things are is how they are supposed to be (see Box 1).

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Box 1.

Defining the constructs of racism.

Racism	An organized social system, in which the dominant racial group, based on an ideology of inferiority, categorizes, and ranks people into social groups called “races” and uses its power to devalue, disempower, and differentially allocate valued societal resources and opportunities to groups defined as inferior. The structure and ideology of racism can persist in governmental and institutional policies in the absence of individual actors who are explicitly racially prejudiced.
Structural racism	Historical and contemporary policies, practices, and norms that create and maintain White supremacy by segregating racial and ethnic communities from access to opportunity and upward mobility by making it more difficult to secure high-quality education, jobs, housing, healthcare, and equal treatment in the criminal justice system.
Systemic racism	Racism characterized by a dominant racial hierarchy, comprehensive White racial framing, individual and collective discrimination, social reproduction of racial-material inequalities, and racist institutions integral to White domination of racialized groups.
Institutional racism	Racially adverse discriminatory policies and practices carried out within and between individual institutions on the basis of racialized group membership. Sometimes used synonymously with structural and systemic racism.
Internalized racism	Acceptance by members of stigmatized races of negative messages about their own abilities and intrinsic worth.

Various studies conducted during the pandemic pointed to structural/institutional racism and systemic discrimination as major factors contributing to the hesitancy and resistance of large segments of the population to the efforts of ministries of health and public health units for them to be tested, isolated and vaccinated in combatting COVID-19. ¹³ This hesitancy and resistance can be traced to experiments such as The Tuskegee Syphilis study conducted in the United States from 1932 to 1972 which is still etched in Black people’s memories. This research involved approximately 400 Black men in Alabama being deprived of treatment for syphilis in order for researchers to study how the disease progressed. ¹⁴ This distrust in the healthcare system was strengthened by “feelings of ill gains for participation in clinical trials to being used as guinea pigs.” ¹⁴ This study along with the fact that for decades, people from African, Caribbean, and other developing countries were subjected to prescription drugs that were considered substandard or that were falsified fuelled the distrust. ¹⁵ The matter with the substandard drugs became so critical that it prompted the World Health Organization (WHO) in 2013 to launch a surveillance and monitoring system for substandard and falsified medicines ranging from vaccines and in-vitro diagnostic tests to cancer treatment and contraception. ¹⁵ These medicines not only have a tragic impact on individual patients and their families but also are a threat to antimicrobial resistance, the WHO research stated.

Similar to the Black and South Asian populations, Indigenous peoples also had high rates of COVID-19 and a deep mistrust of the healthcare system. It is well known that many experiments were conducted on Indigenous peoples over the centuries and they have felt cheated by racist systems that have consistently denied them their rights. ¹⁶ The death of 37-year-old Joyce Echaquan, an Indigenous mother of seven children who died in a Quebec hospital in September 2020, became the subject of a coroner’s inquest for the abuse and neglect she suffered, contributing to her death. ¹⁷ The coroner called on the Province of Quebec to acknowledge that systemic racism exists and "make the commitment to contribute to its elimination.” ¹⁸ However, with the repeated denial by Premier François Legault that systemic racism does not exist, there is little doubt that any change will be made in that province and other places where the sentiments are the same. This denial became even more poignant when, in June 2021, unmarked graves with the bodies of 215 Indigenous children were unearthed at a former residential school in British Columbia, followed a few weeks later by the discovery of 751 more bodies at another school in Saskatchewan. ¹⁹

Approaches

At the height of the COVID-19 pandemic, government and health officials in Ontario turned to community organizations for help in reaching “high priority” populations. The Ministry of Health implemented the High Priority Communities Strategy (HPCS) initiative in which they funded community agencies in areas with high racialized populations in an effort to increase vaccine uptake within these population groups. ²⁰ Government and public health officials had underestimated how deeply engrained were the mistrust, especially of the healthcare system, by people who were disenfranchised and discriminated against for decades. The government’s and health officials’ response was to engage with community organizations, primarily those who worked with the Black, Indigenous, and South Asian communities. ²¹

It took a concerted effort on the part of these grassroots organizations to help community members separate the myths from the facts and provide them with the information, delivered through culturally appropriate and safe lenses, to make informed decisions to protect themselves and their families.^13,22 The community organizations had the most impact in mobilizing people and creating change that reduced the spread of the COVID-19 virus and moved the Region of Peel from being the hotspot to being one of the most highly vaccinated regions in Ontario. The leaders of these community organizations, understanding the reasons for the hesitancy and resistance to the governments’ measures, especially the vaccine, made it clear that they would not force a decision on the members of their communities but would empathize with them and provide the information as it is revealed, giving individuals and families the space to decide for themselves.

During the lockdown, community ambassadors from within the respective communities were deployed to engage with individuals in their homes, on the streets, at bus terminals, grocery stores, and workplaces, giving out personal protective equipment and answering questions about the virus. These ambassadors, who reflected the communities in which they were serving, were able to start building trust within the communities. The lead agencies in the High Priority Community Strategy (HPCS) initiative called on community advocates to participate in task forces which also included public health officials and government representatives to work through the challenges their respective communities faced and strategize innovative ways of reaching deep into neighbourhoods. Town hall meetings were held at which doctors, scientists, and other medical practitioners from the respective racialized groups spoke with the audiences, answering questions in a candid manner. Small-group conversations were held with faith leaders and other community influencers to seek ways to reach those who are on the margins. There were vaccination centres serving specific racialized groups such as the Black, Muslim, and South Asian communities where doctors and nurses from these communities were the immunizers, helping to allay fears and continue to build trust.

In the Region of Peel, community organizations decided this was the time for action and in June 2020 formed the Anti-Black Racism & Systemic Discrimination (ABR-SD) Collective, which comprised more than 25 organizations, with the mandate of dismantling racism and systemic discrimination from within the region. The Collective advocates for systems change that would see the breakdown of barriers that impede the access for many racialized and marginalized individuals. The group held meetings with various systems leaders including the police, education, healthcare, and the various levels of government asking questions regarding what system changes have been made and offering to work alongside the leaders to remove the barriers. Partnerships were forged between community agencies and public health units.

The healthcare team of the ABR-SD Collective prepared a position paper, The Outcomes of Oppressive Systems: And a Collective Call to Co-Design an Equitable and Inclusive Health System in Peel outlining the disparities in the region and made recommendations to tackle the issues. ²³ The paper included stories of the lived experiences of racialized people who felt ignored and slighted by the service they received in the healthcare system. It stated that it was insufficient to provide training to create change and that service users’ experiences and knowledge must be leveraged to create more effective and responsive systems and services that support health and well-being for all. Adding statements about anti-racism, diversity, and equity within policies, processes, and procedures, hiring DEI managers and establishing diversity teams will not make the fundamental and meaningful changes that must occur for health equity to be realized.

Recommendations for moving forward

Based on discussions with community groups and members of the ABR-SD Collective, and its own research, the ABR-SD healthcare team made recommendations in its position paper, some of which are incorporated here as action items that must be implemented to change the path and chart a new course for health equity ²³ : These recommendations include the following:

• Government and public health officials need to continue to partner with community members to continue the long road of trust-building with the diverse communities in their jurisdiction. This partnership must be continuous and not just be instituted in times of crisis.

The paper and recommendations have been discussed with various stakeholders in municipal and provincial governments as well as healthcare systems leaders. Questions were asked of the leaders as to what they are doing to achieve health equity and to demonstrate progress. To date, the discussions have led to plans being developed to include community groups in co-design work on equity and the healthcare team receiving grants to conduct further research primarily to improve data collection of racialized and marginalized groups in the Region of Peel. In conjunction with the work of the healthcare team, the ABR-SD Collective was funded to develop a toolkit, Dismantling Anti-Black Racism & Systemic Discrimination: A Toolkit for community organizations in the Region of Peel, ²⁵ to help community organizations in their quest to achieve equity within their respective spaces and the broader society.

Health leaders needs to be bold, brave, and vulnerable to feelings of discomfort and inadequacy, in some cases, to want to dismantle existing structures that have their foundations in slavery and colonialism, and rebuild new societies that are grounded in equitable frameworks. This rebuilding must include the contributions of all the various stakeholders that rely on these systems, not just a select few, and must be culturally relevant to meet the diverse needs of the stakeholders. Health leaders need to give space at the table to community organizations and incorporate their recommendations into the changes that are being made. No longer will a one-size-fits-all approach to community development be acceptable, especially in the healthcare sector. A transformation must take place.