Why My White Privilege Makes Me Angry; Vaccine Hesitancy and Ethnic Minorities - Guest section by Dr. Josephine Adekola

Why My White Privilege Makes Me Angry

You, Me & Vaccines Article 12: Vaccine Hesitancy and Ethnic Minorities

1. Introduction

I have something very uncomfortable to admit today: I`ve been privileged while being a patient in the healthcare system. I`ve been treated really well. I`ve had my concerns about vaccines and every other medical issue listened to with care. I`m white, cisgender, female, young, and live in a wealthy country (Ireland). I genuinely used to believe that this was the norm. That this was the standard for everyone. When I read stories of ethnic minorities facing stigma in healthcare, I really internalised the frustration and anger they felt.  And I came to realise that it was never luck or compassion that gave me a leg up in my healthcare. It was white privilege. This was a very harsh truth to admit to myself. However, what about those who aren't privileged enough to have concerns heard?Even well known ethnic minorities are not immune to this. The famed tennis player Serena Williams experienced post-birth complications; as well as it being revealed that Williams had been tested for performance-enhancing drugs over two times more than that of other elite American female players.

This kind of experience is far from uncommon in ethnic minority communities. It is particularly true for black women. Health outcomes are also worse for minorities for a variety of other conditions.  According to the CDC website, “Black, Hispanic, and American Indian and Alaska Native (AI/AN) people have had consistently higher rates of severe flu outcomes, including hospitalisation and ICU admission from 2009 to 2019.” Compared with white patients, ethnic minorities have higher age-adjusted fly hospitalisation rates, as well as ICU admission rates. The website also states that “People died in the hospital from flu at similar rates across all races and ethnicities during 2009-2019. Disparities in flu outcomes were greatest in the youngest age groups, particularly among children (0-4 years old).”

Clearly, there are systemic biases affecting health outcomes of ethnic minorities. Therefore, it is unsurprising that charged experiences are what will drive decision making when asked to trust health providers about vaccines. What are the reasons for vaccine hesitancy among ethnic minorities? What experiences have they had when asking healthcare providers about vaccines?  How can we do better as a society? Those are the questions I am going to focus on in this blog post.  

2. Why are minorities vaccine hesitant?

Historical trauma is a key factor cited. Regardless of where you live, historical events always shape culture. When this principle is considered in light of health-related injustices to minorities in the past, it's a no-brainer that it can lead  to a culture of vaccine hesitancy. Probably the most famous example of a historical event is the Tuskegee syphilis study of 1932. According to the CDC website, the USPHS, working with the Tuskegee Institute, undertook a study to record the natural history of syphilis. 600 Black men were recruited, 399 with syphilis, 201 without. Informed consent was not collected. Participants were told they were being treated for “bad blood”. By 1943, penicillin was the treatment of choice for syphilis and becoming widely available, however study participants were not offered treatment. In 1972.  The study was deemed to be “ethically unjustified”, and the study`s end was announced in November 1972. Later in 1973, a class-action lawsuit was filed on behalf of the study participants and their families, resulting in a $10 million, out-of-court settlement in 1974. On May 16, 1997, President Bill Clinton issued a formal Presidential Apology for the study.

Another key aspect is their personal experiences with asking questions about vaccines to their healthcare providers. I mentioned Serena William`s story, however I also mentioned that many working class minorities experience mistreatment. However unlike Serena, they often do not have the agency or financial means to advocate for themselves. In order to be empowered to do this, it is crucial that these communities see themselves represented and included in research and media outreach campaigns. With that, I spoke to Dr. Josephine Adekola, a lecturer in risk communication at the Unversity of Glasgow who produced a film highlighting COVID 19 vaccination challenges for African and Carribean communities in Scotland, called "Scotland African Voices". She kindly shared her research from the project with me

BACKGROUND

• Scotland African Voices film highlights challenges faced by members of the African and Caribbean communities during the COVID-19 pandemic and barriers to vaccination for ACB communities. In the first quarter of 2022, uptake of the Covid 19 vaccine was lowest in the African group at 41.7 percent. This compares with 75.4 percent in the white ethnic group.

• The film was made by Dr. Josephine Adekola of the University of Glasgow, Adam Smith Business School, in partnership with a range of academic, health, policy, and community partners in response to the many specific questions posed by the community when she and her team undertook a research project on covid vaccine experience and hesitancy within ACB communities. Dr. Adekola and her team didn’t know the answers and hadn’t heard them in the media, so made this documentary to connect ACB community groups, Public Health Scotland, scientists who developed the vaccine, academics, and the Scottish Government. It enables those involved to communicate their concerns and views, directly understand each other, and respond.

• The film consists of three community engagement events in Glasgow, Edinburgh, and Aberdeen, highlighting the concerns and curiosities of the public and public health officials and a co-produced way forward for the future of vaccines. There are interviews with leading academics, PHS, and Scottish Government officials. Altogether there were 100 participants in the film development. Partners include Sarah Gilbert and the Vaccine Knowledge Group (University of Oxford), Emma Thompson (the MRC Centre for Virus Research), Mona Simion (Cogito Epistemology Research Center), Deji Bolarinwa (University of Ilorin, Nigeria), Duncan Pritchard (the University of California Irvine), Ilan Kelman (University College London, Institute for Risk and Disaster Reduction), Jason Leitch (National Clinical Director, the Scottish Government), Claire Cameron (Public Health Scotland), Pastor Yinka and Adefolake Adesina (Fountain of Living Water, RCCG, Ayr), pRESPECT Hub Edinburgh, Sharpen Her: the African Women's Network (SHAWM), Glasgow Black and Scot, Aberdeen.

• Scotland African Voices film aims to save lives by encouraging vaccine take-up and addressing health inequalities in the Scottish African, Caribbean, and Black (ACB) communities. Amongst some of the challenges experienced during the pandemic are financial pressure brought about by visa status of no recourse to public funds which for example impacts access to child benefit to support financial pressure from children schooling from home. There was also financial pressure from the national lockdown as many people within the community work on zero-hour contracts as such, they could not access work due to the nature of the dominant occupation accessible to many members of the communities) and income during the lockdown.
• Mental health issue was also a challenge due to the isolation with young children particularly struggling to make sense of the situation and engaging in self-harming activities such as excessive drunk etc. Working and studying from home was also a challenge as many parents were not able to support their children schooling from home to lacking IT skills or providing required gadgets to support their children’s
• Amongst barriers to vaccine uptake within the African and Caribbean communities are mistrust in the government arising from every microaggression, discrimination, and racism and the negative perception of systems and processes in the treatment of people, poor support for grassroots community groups, and disengagement of systems and processes with the wider community. Other reasons cited include anxiety around the safety and effectiveness of the vaccines and vaccine confidence. Additionally, there are challenges around misinformation and conspiracy, negative post-vaccination experience, and the perceived link between PHS and immigration for undocumented migrants exacerbated by the Rwanda policy.

• Addressing the challenges exposed by COVID-19 requires significant changes around current assumptions and thinking in addressing health and social care inequalities which have implications for addressing the broader social inequities. These center around the need to build trust between authorities and the Black communities through continuous engagement and the need to include black voices in all the policy areas that affect them. Consistency in engagement and inclusion of Black voices in policy decisions is important to understand how people think and make the decision they make, helping to establish a collective sense of purpose. To be effective any engagement and inclusion need to happen bottom-up and top-down. A move away from the traditional abuse or misuse of people’s experiences to make decisions. This raises interesting questions about how can include the African and Caribbean communities in all levels of policy decision-making that affect them.

• Ultimately, people want to know that they are cared for before they listen to what authorities or experts have to say. This has implications for the way work systems and processes are designed and these should be ways that care for people. Moreso, trust is fluid; therefore, distrust can often be transferred between experiential contexts.

PRACTICAL NEXT STEPS

• There is the need to address everyday macroaggression, racism, and discrimination to bring about equality in day-to-day experiences and opportunities. While several commitments have been made in relation to race equality in the past (for example, see the Macpherson Report, the Race Relations (Amendment) Act 2000, and the Race Recruitment and Retention Action Plan, following the Black Lives Matter movement, much progress is yet to be made in terms addressing systemic racism, and discrimination. As a starting point, effort should be made toward implementing the recommendations of the Expert Reference Group on COVID-19 and Ethnicity on the systemic issue and risk/improving data and evidence.

• Distrust between the Black communities and authorities is a fundamental challenge in how the Black population engages or accesses health and social care services. Therefore, as a priority, it is essential to develop initiatives and programmes that help to build trust between authorities and the Black communities. This should involve developing national-level strategies for the engagement and inclusion of minority and marginalized voices in policymaking. At present, different agencies are left to determine how and the extent to which they engage with the various minority communities. However, many health and social care institutions are unwilling to ask, listen to, accept, or integrate views from marginalised communities despite publicly promoting inclusion; a practice considered a tactic for 'preserving the status quo' (Stilgoe, 2014, 2016) and "spectacles of public participation" (Polletta, 2016). When inclusion activities occur, they are often under-resourced, suffer from political inference, or miss critical community voices or expertise (Gauvin & Abelson, 2006; Shore & Williams, 2018; Dhamanaskar et al., 2022), leading to public engagement falling short of expectations.

• Any of such engagement should involve collaboration with high-impact community groups with lived experience. Within this, is the to build systems of accountability and continuity. It is also essential to engage with high-profile individuals that are trusted e.g., religious leaders, and establish a think tank or educational group to deal with unconscious bias, hurt, and pain. It is also important not to group the Black population with other groups where there are wide cultural differences and different ethnic communities have different experiences, needs, and priorities.

• Furthermore, there is a need for representation of the African and Caribbean communities at all levels of decision-making both in policy and other sectorial domains. This involves the inclusion of Black experts in policy decisions that affects them, treating them as an equal partner in the process. Representation also involves diversifying the workforce. Within this, it is essential to recruit, retain, and promote Black employees in the workplace to give them authority to decide and speak on issues that will be relevant to the black community; a more effective way of communicating with the Black communities. Recent research suggests that only 1% of the Black workforce get promoted in the workplace in Scotland with many others lacking opportunities or underemployed when they do so.

• Science communication is also a key aspect of addressing barriers to vaccine uptake and inequities in accessing health and social care services as culture impacts how risk information is received. It is therefore essential to communicate in the language people understand using different forms and mediums of communication are needed for non-indigenous groups e.g., identifying circles of influence such as churches, and communities to reach the Black communities. Transparency, integrity, and honesty should underly any communication practice.

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3. How can we do better?

3.1 Acknowledging that the issue exists

As with anything,  it is a multifactorial issue. However, the beginning of addressing any issue is acknowledging that it exists. This is where I`m going to start. The best way to acknowledge that a problem exists is simply observing it in your everyday life. Look for indicators of racism on a practical everyday basis. Are there many people of colour employed where you work? If not, why do you think this is? If so, do you spend less time talking to them? Less time helping them with projects etc?  It's important to be honest with yourself here. Establishing the habit of journaling your experiences can help you figure out where there are patterns in your behaviour. Have other people help you too. Colleagues, friends etc can all hold each other accountable and create more inclusive environments. Don`t even limit this to your work environment. Expand it to cashiers, waiters, etc. Do you treat these people better if they`re of the same ethnicity as you?  Do you engage with those from different ethnicities differently? Why?

  3.2 Patient-provider ethnic congruence

 Increasing the probability that they will see a physician with a similar ethnic background and/or experiences is shown to improve health outcomes. This has been termed “patient-provider racial and ethnic congruence”. However, the vast majority of doctors in the US are white. This includes medical students all the way up to senior faculty members at academic institutions.  Until this is resolved, there is another way to increase patient-provider ethic congruence. Introduce more minority members of staff forming part of a team-based model of healthcare. As racism is a systemic issue, it is a cultural issue by extension. Having a diverse workforce can create this cultural shift that is desperately needed. 

3.3 

Although this is a good start, we also need to expand the systems already in place to further support patients of colour. Funding services like those mentioned above will make healthcare more accessible to many more people of colour. This will in turn, make clinics more inclusive environments. Further, expanding access to Medicare and other social healthcare programmes can help these communities get access to the treatment they need. For instance, employing more community health workers of colour can address this problem twofold. First, it makes community health workforces more diverse. This allows a more inclusive culture at the community level. Second, it means there are culturally competent health professionals in communities. Meaning access to better quality healthcare for more minorities. This further feeds into a culture that embraces diversity. 

4. Conclusion

Disparities in healthcare are costing ethnic minorities their lives. We`ve all been complicit in it and allowed it to continue. So we`ve all got a role to play in eliminating it. 

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References

1. CDC-Health Equity and Flu
2. Tackling structural racism and ethnicity-based discrimination in health
3. The evidence suggests Serena Williams is not being discriminated against by drug testers
4. Adekola, (2023): Scotland African Voices Policy Notes
5. Maya Goldenberg - Vaccine Hesitancy
6. Tuskegee Study - Timeline - CDC - OS