Mallory Ellingson • 2021 Issue
From The Editors:
What does it mean to give someone your trust, and what does it cost? In The Critical Role of Trust in Vaccine Acceptance, Mallory Ellingson explores the influences behind the not-so-new phenomenon of vaccine hesitancy by diving into a history of power abuse by the scientific and medical establishment and its lasting impact on minority communities. Trust, Ellingson argues, is a two-party concept, that involves ceding power to another individual or system in order to reduce the complexity of the decisions that we have to make. In order to improve health equity, it is crucial to acknowledge that mistrust in the vaccine is independent of education or experience; instead, mistrust is a product and symptom of persistent systemic and interpersonal barriers within our healthcare system.
In an interview with ABC News, Dr. Anthony Williams, a Black biomedical researcher, reflected on his family’s response to his enrollment in the Moderna vaccine trial—they questioned how he could “trust a healthcare system that had historically brutalized Black people” [1]. Unfortunately, this response is neither uncommon nor entirely unjustified. In a Pew Research Center poll conducted at the beginning of vaccine availability, approximately 60% of Americans said that they intended to receive a COVID-19 vaccine when one became available, and only about 42% of Black adults said that they intended to get a COVID-19 vaccine [1-3]. Given that racial and ethnic minorities have been among those communities most negatively impacted by the coronavirus pandemic, this hesitance is clearly concerning if not entirely surprising [4, 5]. Medical mistrust among minority communities is a legacy of historical abuses of power by the scientific and medical establishment. Reluctance to vaccinate is not unique to the coronavirus pandemic.
Racial and ethnic disparities in uptake of all recommended vaccines among adults in the United States have persisted for decades [6-8]. Pregnant Black and Hispanic women consistently have lower rates of vaccine acceptance compared to white women [9]. Seasonal influenza vaccine coverage is consistently lower for Black Americans compared to White Americans [10]. During the H1N1 pandemic, racial and ethnic minorities were at higher risk of disease and experienced higher rates of hospitalizations compared to non-Hispanic White Americans,similar to the current pandemic [11, 12]. Although initial reports showed some success in targeted vaccination campaigns of minority groups, later studies found that the pattern of lower vaccination among Black Americans persisted for the 2009 H1N1 vaccine [13, 14].
These consistently lower levels of vaccine acceptance among minority communities are the result of persistent barriers at multiple levels. Some barriers are systemic—there are racial and ethnic disparities in access to healthcare, insurance coverage, and healthcare utilization that can lead to lower access to vaccines among minority populations. There are also interpersonal barriers. Provider recommendations are widely acknowledged as one of the greatest predictors of vaccine receipt, including for minority populations, yet reports of provider recommendations are lower among racial and ethnic minorities for adolescent and adult vaccinations [7, 15, 16]. Lastly, what an individual knows or feels about a vaccine is mediated by all of the above barriers and will ultimately influence their decision to vaccinate.
Trust is inherently a two-party concept, where we cede power to another individual or system in order to reduce the complexity of the decisions that we have to make.
Vaccine hesitancy is defined as any delay or refusal to accept a vaccine [17]. It broadly encompasses a wide range of individual attitudes, from minor questions or concerns that may cause an individual to put off some vaccines but not others to complete and total refusal of all vaccines. The World Health Organization identified vaccine hesitancy as one of the ten greatest threats to health in 2019, a threat that has only grown in light of the ongoing pandemic [18]. A key determinant of vaccine hesitancy is trust, particularly among minority communities. In a reflection on her own participation in one the COVID-19 vaccine trials, Dr. Kimberly Manning writes about how her own identities influence her attitudes around vaccines and participation in clinical trials. As a physician, she knows the benefits of a vaccine and the benefits of having a large and diverse pool of participants in a trial. At the same time, as a Black American and descendent of slaves, she also describes the fear, mistrust and justifiable anger at an establishment that has repeatedly mistreated Black Americans [19]. In a survey of Black and Hispanic Americans conducted by the COVID Collaborative, less than 20% of Black Americans trust in the safety or effectiveness of a COVID-19 vaccine [20]. This lack of trust is independent of education or experience with vaccines. Addressing mistrust is essential to understanding and reducing vaccine hesitancy as well as improving health equity.
We rely on trust in our everyday decision-making—we decide to trust the bus driver to safely deliver us to our destination, or we decide to trust the weatherman about whether or not we need to carry an umbrella. Trust is inherently a two-party concept, where we cede power to another individual or system in order to reduce the complexity of the decisions that we have to make [21]. There exists an implicit imbalance of power in any trust relationship, and this becomes exaggerated when the amount of information shared by two parties becomes more imbalanced. As someone who knows very little about meteorology or the weather prediction business, I am extremely reliant on those who do to inform my daily decision making about the necessity of an umbrella.
Mistrust in vaccines is higher now than it has been for many years, and improving this lack of trust will involve addressing both the external and internal factors that influence trust.
The same dynamic applies to vaccine decisions. Acceptance of a vaccine requires trust in the various actors involved in the vaccination process. Larson et al. separates these actors into external and internal sources of trust. External levers of trust are factors that influence an individual’s baseline trust—i.e., how willing in general is an individual to trust others [21]? A particularly relevant external source of trust among minority communities is the influence of historical experiences—both at the individual and community level. The Tuskegee Syphilis Study is perhaps one of the most infamous examples of medical abuse perpetrated in a minority community. In this study, African-American men with and without syphilis were enrolled in a study, but were neither provided with sufficient information about the study nor given an opportunity to provide informed consent. The aim of the study was to track the natural history of an untreated syphilis infection, so participants were not provided with any treatment even after penicillin, an antibiotic that can completely eliminate syphilis, became available in 1949. The study was not stopped until the early 1970s when news articles emerged condemning the study [22]. The Tuskeegee Syphilis Study is not the sole cause of medical mistrust in minority communities. Rather, it is one incident among many—medical experimentation on Black Americans dates back centuries and medical mistreatment continues today [23]. The history of medical abuse in American combines with an individual’s negative healthcare experiences to create a lower level of baseline trust in healthcare systems [24, 25].
The internal components of trust are those that answer the question “Who do you have to trust in order to accept a vaccine?” These include trust in the product (the vaccine itself), trust in healthcare providers who are recommending the vaccine, and trust in the system that recommends and delivers the vaccine [21]. For example, let’s consider the Human Papillomavirus (HPV) vaccine. HPV is a common virus that can cause numerous types of cancer, including cervical cancer, which used to be one of the leading causes of cancer deaths among women [26]. Racial and ethnic minorities experience higher rates of cancer and other negative outcomes of HPV infection [27]. The HPV vaccine can prevent up to 90% of cancers and yet vaccination rates still lag with less than 40% of adolescents having completed the recommended HPV series by age 15 [28]. In a review of the facilitators and barriers to HPV vaccine acceptance among minority communities, mistrust was identified as one of the primary barriers to vaccine series completion [27]. Minority parents who were knowledgeable about the HPV vaccine expressed hesitancy about the safety of the vaccine (lack of trust in the product) [27]. Healthcare provider recommendations were still considered very effective among minority communities, particularly when delivered by providers who were also members of minority communities (trust in the provider). However, medical mistrust was still expressed in numerous studies, with many participants reporting mistrust of pharmaceutical companies and healthcare, demonstrating how historical mistrust can influence trust in the system that delivers vaccines [27].
Mistrust in vaccines is higher now than it has been for many years, and improving this lack of trust will involve addressing both the external and internal factors that influence trust. Healthcare providers have a critical role in addressing medical trust. There is an inherent imbalance in power in the patient-provider relationship due to the imbalance of knowledge, making trust essential. Communication strategies that can redistribute this power to the patient can improve trust, allowing the provider to have a greater influence on the vaccine decision making process. This can be as simple as having a patient-centered discussion where a healthcare provider listens and expresses empathy in response to patient concerns, rather than dismissing or countering the patient’s questions and concerns about vaccines [29, 30].
Providing the public with accurate and clear vaccine information helps enhance trust in the system.
While vaccines are safe and trustworthy, the integrity of the system that creates them is often questioned [31]. Improving the trustworthiness of these systems needs to be a goal that extends beyond the current context. Reforms that address systemic racism in healthcare will serve to improve trust in the healthcare system and begin to address the historical legacy of abuse by the healthcare system. In the short term, there should be increased transparency around vaccines at all levels—from pharmaceutical companies to policy makers. Providing the public with accurate and clear vaccine information helps enhance trust in the system.
The ongoing COVID-19 pandemic has exacerbated the inequities that already existed in our healthcare system, and unfortunately this has been highlighted in the vaccine distribution program. During the first month of vaccine distribution from December 2020 to January 2021, only about 5% of individuals vaccinated were Black when it was estimated that about 13-14% of the eligible population was Black [32]. How much of this disparity is due to mistrust of the vaccines and how much of it is due to other forces, such as limited access to healthcare or lack of knowledge about eligibility, is unknown. Enhancing trust should be a priority of the COVID-19 vaccination program moving forward. One way to do so is by engaging trusted messengers such as healthcare providers or trusted members of the community. One study found that Black Americans are twice as likely to trust a messenger who is of the same race as them. Black physicians and scientists, such as Drs. Anthony Black and Kimberly Manning as well as Dr. Kizzmekia Corbet, one of the inventors of the Moderna COVID-19 vaccine, are doing incredible work promoting trust in the vaccines. However, the responsibility to improve trust in the COVID-19 vaccines should not be placed entirely on members of minority communities—there need to be efforts made at all levels of the healthcare system to not just address medical mistrust and barriers to vaccine acceptance in the short term but to tackle the broader inequities that are inherent to our current healthcare system.
References
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AUTHOR
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EDITORS
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