Abstract
The adoption of a stakeholder approach to public engagement within the public sector has been extensive. However, there remain critical gaps in the understanding of stakeholder participation arising from hidden disparities that contribute to unequal access to communication channels, information, and hence ultimately knowledge and decision making. The term “epistemic injustice” has been used to describe such inequality of access and consequently, the outcome that ensues. Epistemic injustice is much overlooked in stakeholder theory. This article shows how epistemic injustice can act as a barrier to effective stakeholder engagement and hence to successful public policy formulation and implementation. We use the case of vaccine hesitancy among Scotland’s African, Caribbean, and Black (ACB) communities to illustrate this problem of unequal participation. The study drew on primary data involving 85 participants and secondary data sources from extant literature and explored salient factors shaping barriers to vaccine uptake during the recent pandemic. The findings demonstrate how the failure to grasp epistemic injustice undermines the effectiveness of the stakeholder approach, even with the most well-intentioned efforts. We argue that epistemic injustice is a critical barrier to effective stakeholder approaches.
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1 Introduction
The effective delivery of public services, especially in healthcare initiatives, relies heavily on the active engagement of all stakeholders (Brugha and Zwi 1998; Riege and Lindsay 2006). Stakeholder engagement is instrumental in shaping public health policies, programs, and services and directly influences public perceptions, understanding, and participation and hence the choices made regarding appropriate health-related behaviors (Rowe and Frewer 2005; Aguilar-Gaxiola et al. 2022). However, despite the recognized significance of stakeholder engagement in public service provisions, disparities in stakeholder engagement practices associated with the diversity of communities within a society have become increasingly evident (Brandt et al. 2018). These disparities often derive from differences in the ability of each community member to access communication channels and healthcare information and thus to actively participate in public policy decision-making processes. As a result, perceptions of healthcare priorities and needs vary significantly among different communities. Such differences, in turn, can ultimately influence the effectiveness of healthcare policies and shape the overall quality of healthcare services provided.
This stakeholder approach now widely adopted in the public sector has been influenced by stakeholder theory, formulated initially within a business context (Freeman 2010) that emerged as an alternative to the orthodox view of corporate governance as essentially self-interested contractual relationships between owners/shareholders and those appointed to manage the corporation. It challenges traditional shareholder theory by recognizing that the impact of an organization extends well beyond its direct shareholders (Pfarrer 2010) to those who are nevertheless affected by the organization’s operations and hence have a “stake” in it. The narrative of stakeholder capitalism deemphasizes the narrow focus on shareholders’ interests by taking into consideration the fact that all businesses have stakeholders: “groups and individuals who have a stake in the success or failure of a business” (Freeman et al. 2010, p. xv) even if they do not have a legitimate “share” in it. This is because there are always individuals without direct ownership or involvement in a business that can nevertheless be significantly affected, either positively or negatively by its actions. This stakeholder perspective has become widely accepted as a desirable template for public-sector organizations. Public sector organizations now widely acknowledge that individuals within the larger community who may be directly or indirectly affected by its services have a legitimate stake in the organization’s policy making and implementation activities.
Consequently, stakeholder theory has gained traction in public administration to encourage stakeholder engagement in formulating and implementing government healthcare policies (Heath and Norman 2004). This inclusive approach aims to improve safety, health, and overall well-being. Numerous academic contributions have explored the relationship between public engagement and the application of stakeholder theory within the public sector. For example, Foo et al. (2011) studied the relationship between stakeholder engagement and compliance culture; Greco et al. (2015) examined the effects of public stakeholder engagement on sustainability; Elliott et al. (2020) explored stakeholder salience about organizational performance; and Mitchell (2022) attempted to establish a link between stakeholder support and strategic implementation. However, despite such helpful studies of the effect of the stakeholder approach in public sector organizations, an important aspect that is largely overlooked is the existence of power imbalances in an epistemic environment of stakeholders that can affect their active participation. Not all stakeholders operate on an equal footing, and this imbalance affects their access to communication channels, information, knowledge, and opportunities for interaction, and hence active engagement in decision-making processes. Reed et al. (2018) suggest that addressing power dynamics is essential for achieving more equitable engagement outcomes. The recognition that material differences exist among the public in terms of access to information, knowledge, and interactional opportunities, that communication channels are not equitably distributed, and that participation and engagement may therefore be restricted has been termed “epistemic injustice” (Fricker 2007). Epistemic injustice is an injustice that harms an individual’s ability to know things and to be recognized by others as a credible knower and participant. It is often associated with exclusion, silencing, and the prejudicial distortion or misrepresentation of an individual’s authentic views.
In this study, we used the example of vaccine hesitancy among the African, Caribbean, and Black communities (henceforth ACB) in response to the United Kingdom’s nationwide Covid-19 vaccination program to illustrate the limitations and failure of the stakeholder approach when power imbalances and variability of access through exclusion, silencing, and/or prejudicial distortion, are not adequately addressed during the formulation of public health policies. We show how inattention to the issue of “epistemic injustice” can thwart the effectiveness of public health policy making and implementation. During the different phases of the recent Covid-19 pandemic, the United Kingdom government and its devolved administrations, including Scotland, implemented distinct strategies to address the various health and social challenges.
Initially, Covid-19 response focused on virus suppression through lockdowns, face coverings, and social distancing regulations. The development and approval of Covid-19 vaccines within the scientific community prompted a strategic policy shift, emphasizing evidence-based measures for population protection. In response to this transition, certain lockdown restrictions in Scotland were eased, enabling a return to workplaces and public gatherings with specified precautions, including the continued use of face coverings in specific settings and ongoing monitoring of virus transmission. Nevertheless, the practical implementation of vaccines and treatments within local communities encountered challenges related to public perception and acceptance, stemming from fear, distrust, and perceived injustices—a phenomenon not exclusive to Scotland. However, evidence from the United Kingdom (UK) and the United States (US) indicates that individuals belonging to Black and other ethnic minority backgrounds, historically subjected to systemic inequalities, face an elevated susceptibility to harm during the Covid-19 pandemic. This includes contracting the Covid-19 virus and being impacted by the Covid-19 response measures put in place to curb the virus, including the national lockdown rules, policies, and communications in the UK (Katikireddi et al. 2021; Marrett et al. 2021). This leads to disproportionate effects such as increased levels of death (Phiri et al. 2021), hospitalization, mental health problems (Mahmood et al. 2021), and socioeconomic challenges (Burgess et al. 2022) among Black and other ethnic minority communities (Abuelgasim et al. 2020; Boserup et al. 2020; Kirby 2020).
Vaccine hesitancy describes the intentionally delayed response in accepting vaccination or refusing to be vaccinated despite their availability (MacDonald 2015). Data from Public Health Scotland in 2022 indicated a discernible trend of vaccine hesitancy within the ACB communities, exacerbating over time and resulting in increasingly unfavorable outcomes regarding hospitalizations and Covid-19-related deaths for the communities. For example, during the first quarter of 2022, the Covid-19 vaccine uptake among the African group was notably low at 41.7%, in contrast to the White ethnic group’s uptake at 75.4%. This underscored the persistent challenges in achieving meaningful vaccine engagement among ACB communities after initiating the Covid-19 vaccination program. These statistics indicate variations in vaccine hesitancy across different ethnic demographics, suggesting a need for further examination in the context of Scotland.
Several barriers to vaccine uptake have been highlighted in extant literature. Misinformation and disinformation, racism, historical trauma, mistrust, and systemic inequities are argued to shape hesitancy to vaccines, specifically in ACB communities (Momplaisir et al. 2021; Nephew 2021; Razai et al. 2021; Savoia et al. 2021; Adekola et al. 2022). For example, Zimmerman et al. (2023) argued that misinformation and disinformation spread primarily through social media significantly impact vaccine hesitancy. False claims about vaccine safety, efficacy, or side effects often lead to apprehension among individuals who come across such information (Adekola et al. 2022). Furthermore, historical instances of medical exploitation and unethical experimentation (e.g. the Tuskegee Syphilis Study), have left a lingering legacy of mistrust within ACB communities (Hou et al. 2024) and added to scepticism about the intentions behind public health initiatives, including vaccination campaigns. The Tuskegee Syphilis Study, spanning 1932 to 1972, was an unethical medical research project by the US Public Health Service. With 400 African American men as subjects, the participants were never informed of their syphilis diagnosis, and treatment was intentionally withheld even after the advent of penicillin (Brandt 1978).
Other barriers revolve around personal religious or philosophical beliefs that influence vaccine hesitancy. For example, some individuals may have concerns about the compatibility of vaccines with their religious beliefs or philosophical convictions, leading to reluctance to get vaccinated (Enders et al. 2022). In addition, persistent systemic inequities, and healthcare disparities, including unequal access to quality healthcare, broadly contribute to a lack of confidence in the healthcare system (Becares et al. 2022; Willis et al. 2023). Ineffective communication and messaging from public health authorities have been shown to contribute to vaccine hesitancy (Driedger et al. 2023). Further issues around the lack of cultural competence in healthcare delivery and representation in clinical trials contribute to vaccine hesitancy (Gillard et al. 2022; Restrepo and Krouse 2022). If individuals from ACB communities feel that their specific health concerns and experiences are not adequately addressed, or are silenced and dismissed, it can undermine confidence in the safety and effectiveness of vaccines. Also, more seemingly mundane concerns like transportation challenges, lack of nearby vaccination centers, and scheduling difficulties may deter individuals from getting vaccinated (Orgut et al. 2023). Concerns about vaccine development and approval speed, particularly during the Covid-19 pandemic, contributed to hesitancy (Adekola et al. 2022). Some individuals question the thoroughness of the testing process or worry about potential long-term side effects (Adekola et al. 2022) but these concerns are often brushed aside or ignored. Despite the many influential factors shaping vaccine hesitancy within ACB communities, the role that epistemic injustice plays in shaping hesitancy in vaccine uptake has received very little scientific attention. This is the primary focus of this article.
2 Stakeholder Theory and Public Policy Making and Implementation
Traditional shareholder theory emphasizes maximizing shareholder value as the main objective of a business or governance (O’Connell and Ward 2020). Proponents, such as Freeman and Reed (1983), criticized shareholder theory for its narrow view and argued that businesses should consider the interests of various stakeholders, not just shareholders, recognizing the broader impact of organizational activities on the communities and societies in which they operate. Freeman (2010) argued that stakeholders are critical to the organization’s success, not just external entities to be managed. The stakeholder theory argues that ethical considerations should extend beyond financial performance to include the impacts on employees, communities, and the environment (Freeman and Moutchnik 2013). This broader ethical stance challenged the moral neutrality of shareholder primacy, explaining that organizations are responsible to shareholders and society and have environmental obligations. The argument was reinforced by changes in laws and regulations in the 2000s that required companies to disclose more information about their social and environmental impacts (Weil et al. 2006) and to promote transparency and accountability to stakeholders. Furthermore, the rise of digital and social media platforms shifted the argument toward the importance of transparent and authentic communication with stakeholders (Sedereviciute and Valentini 2011). Organizations were urged to engage with stakeholders in real-time, responding to their concerns and building trust through open and multiple channels of communication.
Within the public sector, stakeholder engagement is widely used to enhance deliberative policy conversations (Wynne 2006; Jones and Wells 2007). Cass (2006) defined “engagement” as the formal processes that include members and stakeholders in decision making and in facilitating gathering or integrating their perspectives. These decisions may pertain to agenda setting, policy framing, or policy development. Rowe and Frewer (2005) emphasized that the success of public engagement hinges on the extent to which comprehensive and pertinent information is sought from all relevant sources, transmitted to all appropriate recipients, and decoded when necessary. However, this depends on fostering capabilities to ensure that all participants possess the skills, tools, and knowledge to actively engage in public discourse (Selin et al. 2017). This is specifically important as the outcomes resulting from various forms of engagement are shaped by contextual factors (including socioeconomic, cultural, and institutional aspects), the design of the process, power dynamics encompassing the values and epistemologies of participants, and spatial and temporal scales (Reed et al. 2018). Wellstead and Biesbroek (2022) explained that successful climate change policy will depend on balancing stakeholder engagement and bureaucratic autonomy. Leyden et al. (2017) asserted that there is no one-size-fits-all solution for stakeholder engagement due to contextual factors presenting distinct challenges in each scenario. Furthermore, the participation process, in and of itself, has the potential to introduce biases that may advantage certain participants, whether intentionally or unintentionally. Wynne (2006) and Thorpe and Gregory (2010) argued that engagement may sometimes need to challenge existing power structures, adequately or genuinely open up policy decision-making processes. If not, stakeholder engagement or dialogues can be instrumentalized to rationalize predetermined decisions and approaches or as a convenient means of eliciting public opinions. Additionally, an emphasis on consensus can potentially stifle the consideration of alternative viewpoints, as Stirling (2008) and Chilvers (2010) noted, thereby disadvantaging minority perspectives.
Despite the extensive research on the use of a stakeholder approach in the public sector, the issue of power imbalances and hence the resultant variability in access to information, knowledge, and communication channels and stakeholder participation remains relatively unexamined. Yet, it is increasingly clear that such power imbalances give rise to the kind of “epistemic injustices” that make effective stakeholder participation almost impossible for those who have been marginalized, excluded, or silenced. Collingridge and Reeve (1986) contended that multiple layers of power and expertise conspire to shape public dialogue. For example, influential interest groups, often comprising the wealthy or those in positions of authority, can sway the outcomes of stakeholder engagement by determining which issues are subject to deliberation, how evidence ought to be interpreted, the types of expertise that are emphasized, and how views, information, or opinions are exchanged. This control of “agenda” by those in positions of power (Bachrach and Baratz 1962; Lukes 1974) and consequently the silencing or exclusion of less authoritative voices is one major cause of “epistemic injustice”; a concept hardly dealt with in the stakeholder literature and hence yet to receive much attention in the social sciences and especially within public administration and management studies.
3 Epistemic Injustice—Meaning and Consequence for the Stakeholder Approach
Fricker (2007) introduced the concept of epistemic injustice as a unique form of injustice that explicitly targets an individual in their role as a knower. According to Fricker, epistemic justice happens when someone is unfairly judged to not have the knowledge they have simply because of unjustified prejudices about their social status, race, color, religion, or educational level or anything else that might lead to them being regarded as less credible than they are. She distinguishes between two manifestations of epistemic injustice—“testimonial injustice” and “hermeneutical injustice.” Testimonial injustice “occurs when prejudice causes a hearer to give a deflated level of credibility to a speaker’s word” (Fricker 2007, p. 2). This prejudice may be based on factors such as gender, ethnicity, race, social background, and sexuality. This unjust treatment impacts the individual as a speaker or knower because the credibility assigned to their testimony is determined by irrelevant factors, offering an unfair advantage or disadvantage in communicating their knowledge or opinions to those unaware of such prejudices. Testimonial injustice can give rise to hermeneutical injustice (Fricker 2007). Hermeneutical injustice “occurs at a prior stage, when a gap in collective interpretive resources puts someone at an unfair disadvantage when it comes to making sense of their social experiences” (Fricker 2007, p. 2). This results in an inadequate representation of the experiences of marginalized individuals and groups, consequently hindering the capacity to portray the totality of concerns and sentiments experienced in any collective engagement. The genuine concerns of some are glossed over or surreptitiously overlooked because they have not been well articulated or because these individuals have been prevented from doing so by unnecessary restrictions. Fricker (2007) argued that the absence of a coherent conceptual framework to interpret one’s own experiences constitutes an injustice because it unfairly privileges those whose experiences are better reflected in the collective body of knowledge. Epistemic injustice impacts both cognitive understanding and practice. On the cognitive front, it hinders one’s capacity to effectively comprehend and articulate their experiences, diminishing their influence in personal or public discussions. On a practical level, epistemic injustice contributes to the formation, perpetuation, or intensification of socioeconomic inequalities and broader social and structural injustices (Fricker 2007).
Byskov (2021) identified five conditions whereby epistemic injustice may occur. These include unfair outcomes, unfair judgment about epistemic capacity, unfair denial of stakeholder rights, unfair denial of knowledge, and unfair existing vulnerability. The first condition asserts that “for someone to be unjustifiably discriminated against as a knower, they must suffer epistemic and/or socioeconomic disadvantages and inequalities as a result from the discrimination” (Byskov 2021, p. 118). The second condition states that “for someone to be unjustifiably discriminated against as a knower, the discrimination must involve prejudiced (i.e., unfair) sentiments about the speaker” (Byskov 2021, p. 118). The additional conditions pertain to stakeholders’ rights, contributions to knowledge, and social justice. The third condition stipulates that “for someone to be unjustifiably discriminated against as a knower, they must be somehow affected by the decisions that they are excluded from influencing” (Byskov 2021, p. 118). The fourth condition states that “for someone to be unjustifiably discriminated against as a knower, they must possess knowledge that is relevant for the decision that they are excluded from (Byskov 2021, p. 118). The fifth and last condition states that “for someone to be unjustifiably discriminated against as a knower, they must at the same time also suffer from other social injustices” (Byskov 2021, p. 118).
Several studies have attempted to explore epistemic injustice from a public policy implementation perspective. For example, Byskov and Hyams (2022) highlighted how the climate change policy-making process meets Byskov’s (2021) five conditions of epistemic injustice. Byskov and Hyams (2022) highlighted that indigenous knowledge often suffer epistemic disadvantage among other forms of expertise. Moes et al. (2020), in their exploration of epistemic injustice within health insurance, explain that patients or medical professionals who are not appropriately regarded as credible and intelligible agents lack the societal influence to shape priority-setting practices in health insurance. Additionally, they may be at risk of being unfairly excluded from equitable distribution of financial and medical resources. Pozzi (2023) contends that the harm caused by machine learning-induced hermeneutical injustice, often termed automated hermeneutical appropriation, is heightened when the machine learning system shapes meanings and shared hermeneutical resources without permitting human oversight. This detrimentally impacts understanding and communication between stakeholders engaged in healthcare decision making. Cummings et al. (2023) introduced a hierarchical structure encompassing individual/collective, structural, and systemic epistemic justice, offering new insights into local knowledge, decolonized education, and the significance of network justice. Ultimately, epistemic injustice or disadvantage often arises due to power hierarchies within societal structures, creating power asymmetry among stakeholders (Ho and Unger 2015). It arises when influential social agents unfairly marginalize the knowledge of less powerful individuals and communities based on factors like gender, race, class, or ethnicity. In our empirical study, we explored epistemic injustice as a barrier to vaccine uptake within Scotland’s ACB communities.
4 Methodology
The data for this study were collected between April and July 2022 following ethical approval from the University's ethics committee. Semistructured interviews were used to gather data, facilitating thorough discussions between the interviewer and participants. The sample comprised of six academics (professors), one public health practitioner, two religious leaders, and one senior government official in public health. Recruitment involved snowballing and purposive sampling methods (Tongco 2007; Valerio et al. 2016). Ethical concerns took precedence during the research, with all participants giving informed consent and their privacy and anonymity rigorously safeguarded (Grinyer 2009; Novak 2014). Three community discussions with members of Scotland’s African, Caribbean, and Black communities involved 25 participants each. Community discussions were conducted in Glasgow, Edinburgh, and Aberdeen. Participants from various backgrounds and ages were invited to discuss their views on Covid-19 vaccines. The aim was to provide a platform for participants to express their opinions, concerns, and suggestions regarding vaccine uptake. Community researchers facilitated community discussions to ensure a structured yet open conversation.
The interviews and community discussions were video recorded. Video analysis has emerged as a potent and innovative tool for qualitative research (Knoblauch et al. 2012). This methodology engaged participants in a reflective exploration of thematic elements within the film. Videography possesses a distinct capacity to captivate audiences in a manner unparalleled by conventional research methods. Belk and Kozinets (2005) underscored the videos’ ability to immerse viewers in a multi-sensory experience, facilitating cognitive understanding and generating enthusiasm and emotional connection among audiences. This emotional connection is cultivated by creating accessible, intimate experiences that enable individuals to authentically engage with the material (Kozinets and Belk 2006; Petr et al. 2015). The data collection process, via community discussions, provided a robust understanding of the barriers and facilitators of Covid-19 vaccine engagement.
The data collection continued until no new significant themes or insights emerged from the discussions and interviews, ensuring data comprehensiveness (Fusch and Ness 2015). This methodological approach allowed for a nuanced exploration of individual and community perspectives, contributing to a comprehensive analysis of the study’s objectives. The collected data were subjected to rigorous qualitative analysis (Sandelowski 1995). A thematic analysis approach was employed, where the first author systematically reviewed, coded, and categorized the collected data into themes and subthemes (Braun and Clarke 2012). The data collected in this study have also contributed to creating the Scotland African Voices (SAV) film.Footnote 1 The award-nominated documentary has been screened in Glasgow, Stirling, Edinburgh, Dundee, Aberdeen, and the Scottish Parliament, as well as by Public Health Scotland and the Scottish Government at the organizational level. The data analysis combined the primary data collected as part of this study with secondary data from the literature review and publicly available materials and statements from politicians and policymakers during the pandemic. Social science research increasingly relies on secondary data to tackle complex questions, especially those related to behavior at both individual and systemic levels (Davis-Kean et al. 2015). These secondary data sources also draw on various evidence and expert perspectives, providing unique insights into issues surrounding epistemic injustice.
5 Data and Findings: Evidence of Epistemic Injustice
The data gathered highlight the presence of epistemic injustice in the context of Covid-19 policy and vaccine rollout regarding Scotland’s ACB communities, following Byskov’s (2021) five conditions of epistemic injustice: unfair outcomes, unfair judgment about epistemic capacity, unfair denial of stakeholder rights, unfair denial of knowledge, and unfair existing vulnerability.
5.1 Unfair Outcome
The first condition of epistemic injustice is situations where individuals subjected to unjustifiable discrimination as knowers not only face epistemic disadvantages, such as having their knowledge discredited or ignored but also socioeconomic inequalities stemming from this discrimination. The interplay of both epistemic and socioeconomic factors highlights the multifaceted nature of the injustices faced by individuals in this context. The disproportionate impact of Covid-19 on the ACB communities was highlighted by Public Health Scotland data with an official saying that:
At Public Health Scotland we have been monitoring the impact of the disease in minority ethnic communities very carefully ... There is definite evidence and continued evidence of increased risk for most ethnic minority groups relative to the White population groups in Scotland. Rates for hospitalization among people in Scotland who identify as Black, as African, as Caribbean they have definitely been higher and there’s actually been increasing inequalities over time throughout [the pandemic] … If you look at the first wave and you look at rates of hospitalization and death, and you look at those in the Black, African, and Caribbean group compared to the White population group in the first wave, the rates were one and a half times higher in that Black, African, Caribbean group. In the second wave, it was twice as high. In the third wave, it was three times as high, and that’s really had devastating consequences for people because we know that these aren’t just numbers. These are real people with their lives to lead. (Public Health Scotland official)
These data point unequivocally to an unfair outcome, as it demonstrates that certain ACB communities are experiencing significantly worse health outcomes compared to the White population. In the context of epistemic injustice, it raises questions about recognizing and understanding these disparities within decision-making processes and policies related to public health. Aside from the direct health consequences, Cheshmehzangi (2022) pointed out socioeconomic disparities, including a poverty rate twice as high in the Black and other ethnic minority communities compared to the White population. This is similar to other studies that have reported structural and socioeconomic disparities within the Black and other ethnic minority communities (Lo et al. 2021; Phiri et al. 2021). In the context of pandemic response and policies, the marginalized socioeconomic status of these communities positions them in an epistemically disadvantaged stance, limiting their influence on policies. Consequently, this disparity increases the likelihood that resulting adaptive policies are less attuned to these marginalized communities’ needs, interests, and experiences.
5.2 Unfair Judgement about Epistemic Capacity
The second condition of epistemic injustice regards unfair discrimination against an individual as a knower, and this discrimination involves biased feelings, indicating unjust judgments about the speaker’s epistemic capacity. Our data suggest a complex interplay of epistemic and specifically testimonial injustice. Testimonial injustice can be seen in the context of ACB nurses as highlighted by one of the participants in the Edinburgh discussion:
One minute we are applauding nurses, clapping for them every Thursday. And all of a sudden, the nurses that didn’t want to take the vaccine, all of a sudden [they’re losing jobs] … Just like that, overnight … people didn’t really feel free to ask questions, even on closed groups on social media, because anyone would just reign in on them, like, you should just get the vaccine, you should get the vaccine, you are an anti-vaxxer … but people have a choice and people should be able to express that choice … why was it not okay for people to ask questions and make an informed decision? And the reason was nobody really knew what was going on … All of a sudden, it actually felt like … people were like statistics rather than people, owned by something, that you just have to comply with. You were not free to ask questions. (Edinburgh community participant 13)
The threat to or dismissal of nurses who chose not to take the vaccine implies a lack of recognition of their concerns or reasons for hesitancy. This depersonalization and dismissal of their testimonies contribute to testimonial injustice, as their voices and perspectives are marginalized in the decision-making process. Lamenting about the lack of recognition and acknowledgement, one of the community leaders in the Edinburgh discussion expressed that:
We work with people that have long term illnesses ... for health inequality purposes, we approached NHS Lothian, we’re here, we’re not hard to reach, we’re working with people who have long-term health. They’ll not look at us because we are a small organization somewhere. They’ve already got other organizations that they’re working with and stuff like that. So it’s like how do we profile ourselves for the good work that we do? Especially when it comes to health inequalities. (Edinburgh community leader 2).
Injustice against epistemic capacity here involves the denial of recognition and consideration for the valuable insights and efforts of the small organization run by those from the ACB communities. It reflects a systemic issue where those with significant on-the-ground knowledge are sidelined in favor of more visible or established organizations, perpetuating a cycle of inequality and limiting the potential for collaborative and comprehensive solutions from the grassroots level. Moreover, government officials were breaking pandemic-related rules, negatively impacting public trust in these authorities. The information on Matt Hancock, Dominic Cummings, and Boris Johnson violating the government’s Covid-19 advice is widely known. It has been circulated in the public domain, creating a notable discussion and raising questions about adherence to pandemic guidelines by prominent figures. This breach of public trust has led to accusations of inconsistency and hypocrisy in enforcing public health measures. Moreover, forced vaccination through employment, colloquially termed “no jab, no job,” was identified as a coercive tactic, further diminishing trust. This also feeds into the epistemic problems regarding conflicting claims and contradictory behaviors. In this sense, no one seems confident and yet, some voices are delegitimized.
5.3 Unfair Denial of Stakeholders’ Rights
A third condition of epistemic injustice occurs when a knowing individual is affected by policy decisions made but are excluded from influencing them; they experience an unjust denial of stakeholder rights. It is worth noting that discussions around vaccine access, misinformation/conspiracies, and hesitancy have taken place during the Covid-19 pandemic. In the ACB communities, concerns about historical medical injustices, access to vaccines, and the need for culturally sensitive approaches that take the perceptions and circumstances of minority communities have been raised. According to a community leader in the Edinburgh community discussion:
There was this whole net of people underground who didn’t have access to GPs [general physicians], who couldn’t get the vaccine anyway. And if we’re talking in terms of Covid being a public health risk, I feel like the government failed where that’s concerned ... Up to now, we still have people that are in dire circumstances, homeless, living in hostels, not having access to [vaccines] ... And it’s really about giving the treatment and giving everybody access to the treatment, giving everybody access to vaccines, and within that, respect that was a huge problem, especially within the niche [Black refugee groups] that I work in. (Edinburgh community leader 8)
Such limited access to vaccines for these disenfranchised communities created an imbalance in vaccine access. A community leader at the Glasgow community discussion highlighted a deficiency in the healthcare system’s responsiveness, indicating a disconnect in reaching out to communities effectively. This could further contribute to epistemic injustice by limiting access to crucial information for specific communities.
There was a whole lot of conspiracy theories out there. People didn’t understand what the vaccines were. Then I remembered from the Nigerian Community Scotland, we had an awareness program online and we had to bring people in to let people know what vaccines are … I remember having to contact my own GP and others, and they didn’t even have people who could do things online, like come to the community and talk to the community about this. (Glasgow community leader18)
The epistemic injustice here lies in the insufficient public communication and community understanding surrounding vaccines that were being rolled out to provide clear information and address misconceptions by providing accurate details about the purpose of vaccines. The absence of such efforts contributed to a gap in shared knowledge, potentially leading to the perpetuation of misinformation and hesitancy. Furthermore, a lack of cultural sensitivity in addressing the unique concerns of diverse communities further undermined trust and engagement in the vaccination process, reflecting an unjust denial of their right to be understood and assured in public health initiatives as reflected in the below quote:
People were not getting questions answered about the side-effects of this thing. So if you’ve had the first one [vaccines] and you’ve had a bad reaction to it and your doctor cannot explain to you what’s going on, the chances of you getting the next and the third are very low … Because the truth is, they won’t report the side-effects of it. I know a lot of people don’t talk about it, but I know people who had reached menopause and they’re now having periods again. People who have lost hair. There was one girl who after having the vaccine had to be in a cold shower to stop her body from shaking constantly. Doctors can’t answer those questions, so why would I go and get a third one? (Edinburgh community participant 12)
Doctors being unable/unwilling to explain adverse reactions led to some individuals facing barriers to understanding and making informed decisions about their health. This is evidenced by the lack of confidence in reporting and addressing side effects and it indicates a need for greater epistemic justice in accessing and disseminating information related to vaccines. In an epistemically just system, everyone should have access to comprehensive and transparent information, enabling them to make informed choices about their health without facing disparities in access and knowledge.
5.4 Unfair Denial of Knowledge
The fourth condition of epistemic injustice entails the exclusion of a knowledgeable individual from a decision-making process that inevitably affects him/her; s/he experiences discrimination as a knower. For example, the absence of diverse representation in decision-making bodies overseeing the Covid-19 vaccine policy risks formulating policies without taking into account specific communities’ distinctive needs and apprehensions, thereby reinforcing the unfair denial of their rights as integral stakeholders in shaping healthcare strategies. This is typical of many public health decisions. A senior Scottish government official explained how decisions regarding Covid-19 were made:
[Those involved in the policy making] not as diverse and reflective as it should be … in the end, the decisions are made by the First Minister and the Cabinet of the country, that’s who makes the decisions because they are the elected leaders of our nation … Now the advisers around them are hundreds and thousands of different individuals. There are a few of us who are in the room with them and then beyond that there are Public Health Scotland, there is the UK Health Protection Agency, there’s a series of kind of circles out from them who engage with communities all the time who try and hear from voices from the faith and belief sector, from the hospitality sector, from the business owner community, from ethnically diverse groups and I tried to do as much of that as I could during Covid. In the end, the small room advises the First Minister what to do and the First Minister and her Cabinet decide what to do. (Senior government official)
Decision making is almost inevitably “top-down” and in the context of the pandemic response, this was the case. It highlights a centralized approach driven by elected leaders. However, the concentration of decision-making power within a small room, despite efforts to gather input from diverse sources, raises questions about the inclusivity and exclusivity of the decision-making process. The Senior government official went on to emphasize the need for engagement with various sectors, including ethnically diverse groups, to incorporate diverse perspectives:
We should include, as you asked the question, I thought of the Gypsy traveller community. The Gypsy traveller community traditionally quite vaccine sceptic, quite difficult to hear from traditionally so in order to get to them, you need to speak to the community leaders who can help with that. So how are we going to communicate? Which trusted voices are we going to use because the 53-year-old White guy is probably not going to be able to engage with them. So we did that and we did that with the African Caribbean community. We did it with young people. We did it with older people. So we tried our best because if you’re the national [XX] director, there’s only one of me so you can’t have every ethnicity represented in the one individual. So my job is to try and hear from those voices as much as I can, take those voices and give that advice to the First Minister. (Senior government official)
While a genuine attempt was made to try to be more inclusive and acknowledge community knowledge and concerns, more could have been done. Also, the prospect of diluting concerns arises from acknowledging that a single individual, like the national XX director, cannot personally represent every ethnicity or community. This situation poses a challenge in accurately capturing the nuances of diverse perspectives and experiences, potentially leading to a dilution of concerns during decision making, and the unintentional marginalization or misinterpretation of specific communities’ experiences.
5.5 Unfair Existing Vulnerability
The fifth condition of epistemic injustice is that to be unfairly discriminated against as a knower, one must undergo concurrent experiences of other social injustices thereby implying an already existing unjustifiable vulnerability. In the context of Scotland, the ACB communities comprise mostly first-generation migrants, many are still on visas (for example, student and work visas) or are asylum seekers or refugees with several restrictions on where and how much they can work, exposing them to several vulnerabilities related to visa restrictions, unemployment/underemployment, lack of opportunities, and a general lack of trust in systems including the healthcare system. Participants also expressed deep-seated distrust stemming from historical injustices and systemic racism. Specifically, they pointed to a lack of opportunities for Black people with one participant (Glasgow community leader 3) at the Glasgow community event explaining that: “It is time for us to look at what Covid has exposed to us ... You know, we have people who are qualified for positions, they are not getting it, we can’t even get the reasons why they are not getting it.” Similarly, in the Edinburgh community discussion, another participant highlighted the income and work challenges experienced by the Black and other ethnic minority communities in Scotland:
People went into care and cleaning because the jobs were there during Covid, people had been pushed to go to these jobs ... You go to any organizations that help ethnic minority groups and the first thing they tell you about is a nursing home. And at the beginning, I did it, I did my fair share of care because that was the only way in Ireland, Dublin that I could get a visa, and that was because I didn’t want to be illegal. So the only way I could get anything, a working document … work permits were coming only through that and cleaning. (Edinburgh community participant 14)
Another participant reported instances where individuals of Black ethnicity were disproportionately placed on the pandemic’s frontlines without receiving adequate support. One participant explained that:
Me, working in the healthcare industry, you would hear a lot of Black people on the frontline, they are working directly with people who have Covid, direct contact. Their White colleagues are at the back end, so it’s very easy for you to catch Covid and die. We work with people who have long-term illnesses, like HIV, and diabetes, they were not getting the support and care that they needed at that time ... If a Black person caught it [Covid-19], it was highly likely that they would catch it badly, especially if they have long-term illnesses, or especially if they are frontline workers that are working directly. (Edinburgh community participant 16)
The two quotes above show how, almost inevitably, minority groups like ACB are pushed into “front-line” Covid situations during the pandemic so that they are the most vulnerable and exposed. Hence, they struggled more acutely between their cultural mistrust of vaccines and the first-hand knowledge of the seriousness of Covid-19. Thus, they are the ones that needed listening and assurance most yet were not attended to sufficiently. Social vulnerability was also associated with language where non-native language speakers may feel less confident expressing themselves in a majority language. Reflecting on the language challenge, one participant explained that:
What I feel should happen is enough information should be out there in a language that people understand so that they can make their own choices ... if you’ve got the money, put it in people’s languages, in Punjab, in Somali, in Swahili, or in Shona. People need to understand in their own language and be able to decipher what’s going on in their own language. We are foreigners at the end of the day. So if you’re trying to get people to take the vaccine, speak to people in languages that they can understand around it and people can make their own choices. (Edinburgh community leader 5)
Lack of information in one’s language can be seen as a form of epistemic injustice, where certain communities may be disadvantaged due to linguistic barriers. Testimonial justice is also implicated as the speaker advocates for authentic communication that respects the agency of individuals. Moreso, undocumented individuals faced distinct challenges as they needed to have fixed addresses, leading to exclusion from vaccination invitations. This vulnerable position is exacerbated by a perceived connection between public health services and immigration status, causing apprehension within migrant communities. Furthermore, refugee policies like the Rwanda policy add a layer of complexity to the experiences of undocumented migrants, compounding their challenges in accessing essential services and support. This underscores the multifaceted challenges related to the experience of the ACB communities in Scotland that make them socially vulnerable to epistemic injustice.
6 Epistemic Injustice: An Overlooked Barrier to Vaccine Hesitancy
The issue of stakeholder engagement with public healthcare initiatives such as the Covid-19 vaccine presents a unique and valuable case example to explore the role of power dynamics and the inadequacies of the stakeholder approach. Unbeknown to many, in a stakeholder approach, power imbalances can result in bias in access and participation from the uneven distribution of influence and control in the interactions and processes between public policy makers and a diverse populace. This, in turn, sustains the dominance of specific perspectives and influences over the prioritization of certain issues over others within the policy domain, perpetuating epistemic injustice despite the best of intentions in seeking stakeholder participation. This calls for the need to pay greater attention to the issues of epistemic injustice within public policy making.
The data analysis underscored the significant implications of epistemic injustice as a significant barrier to vaccine hesitancy, which, to date, has lacked any empirical and theoretical contributions. The analysis of Covid-19 vaccination initiative highlighted how epistemic injustice and overlooking power disequilibrium between stakeholders’ engagement can lead to vaccine hesitancy especially among minority groups deprived of adequate access to channels of communication, accurate information, and active stakeholder participation. In terms of unfair outcome epistemic injustice conditions, the research highlighted the disproportionate impact of the Covid-19 pandemic on ethnic minority communities, particularly those of Black ethnicity. This included increased vulnerability to the virus, the impact of response measures, and various socioeconomic challenges. From an epistemic injustice perspective, this revealed a potential lack of consideration for these communities’ unique experiences and vulnerabilities in formulating Covid-19 response measures Regarding unfair judgment about epistemic capacity, the study suggested the underrepresentation and neglect of local knowledge in pandemic response and vaccination planning. While the Joint Committee on Vaccination emphasized evidence-based decision making, more explicit consideration of diverse perspectives was needed and raised questions about the inclusivity of the decision-making process. The situation was also exacerbated by a number of prominent individuals themselves flouting the very regulations they themselves had imposed thereby undermining epistemic confidence in the Covid-19 decision-making process and by extension the subsequent vaccination rollout.
In the context of the unfair denial of stakeholder rights, the study highlighted the centralized decision-making approach, with decisions ultimately made by elected leaders. While efforts were made to engage with diverse sectors, including ethnically diverse groups, the concentration of decision-making power raised concerns about inclusivity. Regarding the unfair denial of knowledge, the research revealed frustration and disillusionment among community leaders regarding underutilizing their skills, ideas, and expertise, emphasizing the importance of recognizing and valuing relevant knowledge within specific contexts. The underutilization of valuable insights from lived experiences hindered the development of effective and equitable pandemic responses. Regarding the unfair existing vulnerability, emphasis on poverty and other social vulnerability such as migration status, as underlying issues behind vaccine hesitancy further illustrated the complex interplay between socioeconomic factors and epistemic inequalities.
The findings highlight the presence of epistemic injustice in the stakeholder approach following the Covid-19 pandemic in Scotland. These underscore the need to recognize and address these injustices in engagement, decision making, and knowledge dissemination. As elucidated by Fricker, this issue can have far-reaching consequences, as individuals who have encountered the disheartening experience of not being taken seriously may subsequently doubt their capacity to acquire and convey knowledge (Hookway 2010). Such experiences may lead them to stifle their voices or diminish their perspectives, which, in turn, can prove detrimental to endeavors to enhance public safety and foster a culture of organizational safety (Kok et al. 2022). A key concern related to epistemic justice in stakeholder theory pertains to participation—who is included and excluded from engagement initiatives, consequently determining who gains access to the disseminated knowledge and who is denied such access (Besley 2012). As Grasswick (2018) argued, individuals from socially marginalized lay communities can experience epistemic trust injustices when potent sources of knowledge, like scientific insights, are created without their involvement and when the necessary social conditions for establishing trustworthy relationships with the pertinent knowledge institutions are not met. Cultural and linguistic sensitivity is vital to combat hermeneutical injustice, where specific communities lack the language or frameworks to express their experiences. These issues are “obstacles to openness” that must be overcome to foster a more inclusive conversation (Fieller and Loughlin 2022). Recognizing and respecting diverse cultural and linguistic backgrounds is essential for addressing this injustice. For this reason, Kok et al. (2022) call for policymakers to be attentive to and rectify the systems that can give rise to epistemic injustice.
Consequently, there are several crucial recommendations for various stakeholders, encompassing health practitioners, community groups, health researchers, and science and policy officials. Health practitioners are advised to undergo cultural competence training, actively engage with community leaders, and ensure diverse representation in healthcare settings. Community groups are encouraged to advocate for representation, empower members with health information, and collaborate with healthcare providers for community-specific solutions. Health researchers should embrace community-based participatory research, ensure diversity in study representation, and adhere to ethical research practices. Science and policy officials are urged to ensure inclusive decision making and transparent communication, and provide information in multiple languages to address the concerns and needs of marginalized communities. These recommendations collectively aim to promote an epistemic just society and a more equitable and culturally sensitive healthcare system.
7 Conclusion
The research explored the vaccine hesitancy case and illustrated how the failure to grasp power dynamics undermines the stakeholder approach. The analysis underscored the underrepresentation of diverse perspectives in decision making, hindering inclusive policies. A more comprehensive understanding and effective implementation of the stakeholder approach to public sector policy making must consider the unequal distribution of power and the possibility of epistemic injustice arising from such power dynamics. Epistemic justice demands transparency in decision-making processes. Communities should be able to hold policymakers and institutions accountable for their actions and the impact of their decisions. Lack of transparency can exacerbate epistemic injustices. Recognizing and valuing community knowledge is crucial for equitable pandemic responses.
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Acknowledgments
This research has been made possible thanks to the funding received from the Impact Acceleration Account at the University of Glasgow. We extend our heartfelt gratitude to all the participants and community partners who have played a vital role in this project. Your contributions, especially in gathering people and facilitating community discussions, have been invaluable. Special thanks to Fountain of Living Water, RCCG, Ayr; pRESPECT Hub Edinburgh; Sharpen Her: The African Women’s Network, Glasgow; and Black and Scot Aberdeen and Jezreel Consultancy.
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Adekola, J.U., Chia, R. Stakeholder Theory, Public Engagement, and Epistemic Injustice: The Case of Covid-19 Vaccine Hesitancy in Scotland’s African, Caribbean, and Black Communities. Int J Disaster Risk Sci (2024). https://doi.org/10.1007/s13753-024-00572-8
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DOI: https://doi.org/10.1007/s13753-024-00572-8