Building Trust in and Access to a COVID-19 Vaccine Among People of Color and Tribal Nations

"In this moment of crisis, we must find new ways to harness community power to drive broad-based engagement in public health that is focused on saving lives, especially the lives of those who have been especially hard hit by the COVID-19 pandemic."

In the United States (US), the COVID-19 pandemic has had a disproportionate impact on communities of colour and tribal nations. The hope of correcting this situation through vaccination is complicated by lack of confidence in the vaccine and inequitable access to it, which are particularly acute in those very communities. This mistrust has evolved over centuries of structural racism and bias in the design and delivery of healthcare, such as previous vaccine trials. In this context, in October 2020, Trust for America's Health (TFAH), the National Medical Association (NMA), and UnidosUS hosted a convening of 40 experts in racial justice and equity, community engagement, public health, healthcare, and science in an effort to advise policymakers on the barriers to vaccine receptivity within communities of colour and tribal communities and strategies for overcoming those barriers. This report (with a related webinar and slides available below) emerged from the gathering.

The report begins by sharing data related to, and the reasons behind, the disproportionality in COVID-19's impact among certain racial and ethnic groups, resulting in higher rates of illness, hospitalisation, and death due to COVID-19. It also explores the deep roots of vaccine hesitancy among people of colour and tribal groups, who have experienced harms in the US including medical experimentation without informed consent, forced sterilisation, the weaponisation of disease, and other wrongs. Current-day experiences, such as lack of clear, consistent culturally relevant information about the vaccine and the virus in appropriate languages and cultural contexts, further erode trust.

Insights gleaned from convening participants coalesced into four principles to guide decision-making and action:

1. Agency: the opportunity and resources to ensure full and authentic participation and leadership in all steps of the vaccine development, distribution, and monitoring process. This means, for example, ensuring that communities of colour and tribal communities and sovereign tribal governments have adequate information to engage their stakeholders and communities according to their own practices and protocols and based on the assets that these communities themselves identify and leverage.
2. Transparency: involvement of members of communities of colour and tribal communities in development, implementation, monitoring, and communication during each step of vaccine development and dissemination. Through such participatory processes, risks associated with the vaccine must be candidly communicated.
3. Relevancy: accurate, community-informed collection, reporting, and use (with consent) of disaggregated data to guide planning and decision-making. Notably, a one-size-fits-all approach to community engagement, planning, communication, and vaccine distribution and administration will not work within diverse communities.
4. Accountability: the obligation of government at all levels, the public health sector, the healthcare sector, and pharmaceutical companies to hold themselves - and to be held by others - to high standards of ethics, transparency, and integrity. When mistakes are made, they must be promptly acknowledged and corrected.

Grounded in these principles, the convening created the following recommendations for policy action:

• Ensure the scientific fidelity of the vaccine development process - For example, the Food and Drug Administration (FDA) should engage health and public health professional societies, particularly those representing healthcare providers of colour, local public health officials, and other stakeholders with a role in vaccination, allowing and empowering these groups to validate all available data, review the vaccine development and approval process, and issue regular updates on data to their patients, members, and the public.
• Equip trusted community organisations and networks within communities of colour and tribal nations to participate in vaccination planning, education, delivery and administration - For example, state, local, tribal, and territorial authorities should authentically engage in vaccination planning with community-based organisations, community health workers/promotores de salud, faith leaders, educators, civic and tribal leaders, and other trusted organisations outside the clinical healthcare setting as key, funded partners.
• Provide communities the information they need to understand the vaccine, make informed decisions, and deliver messages through trusted messengers and pathways - For example, messaging about the vaccine should be appropriate for all levels of health literacy, and planners should provide realistic and clear information that meets people where they are (e.g., barber shops, bodegas, grocery stores, places of worship) and ensure that trusted messengers in those places have the information they need to be credible and authentic spokespeople.
• Deliver vaccines in community settings that are convenient, trusted, safe, and accessible - For example, planners should leverage community-based organisations to ensure that vaccination sites are located in areas that have borne a disproportionate burden of COVID-19, including congregate living facilities, and they should ensure inclusivity by, for example, attending to standards for disability and language access.
• Ensure complete coverage of the costs associated with the vaccine incurred by individuals, providers of the vaccine, and state/local/tribal/territorial governments responsible for administering the vaccine and communicating with their communities about it.
• Provide additional funding and require disaggregated data collection and reporting by age, race, ethnicity, gender identity, primary language, disability status, and other demographic factors on vaccine trust and acceptance, access, vaccination rates, adverse experiences, and ongoing health outcomes - For example, leaders from communities of colour and tribal communities should be involved in planning ongoing data collection on vaccination efforts, interpreting data, adding cultural context, sharing data with communities, and determining implications and next steps.

The experts stress: "Ultimately, it is not the responsibility of people of color and tribal communities to find a way to trust the COVID-19 vaccine. Rather, it is the responsibility of governments at all levels, the public health sector, the healthcare sector and the pharmaceutical industry to develop and equitably disseminate a safe and effective vaccine in ways that are deserving of trust. It also requires acknowledging, respecting and resourcing the power and agency of communities of color, tribal communities and those who serve them in the development of, dissemination of, and communication about a vaccine that is worthy of trust."

Specifically, noting the pace at which COVID-19 vaccines have been developed and the risk of conveying a sense that the process has been rushed, the experts advise governments, the public health and healthcare sectors, and the pharmaceutical industry to "listen, learn from others, value and fund local expertise, address longstanding systemic barriers, and partner in new ways. In so doing, they will earn trust, increase rates of vaccination, and allow for significant progress to be made in fighting the COVID-19 pandemic."

Editor's note: Click here and then click on the arrow to watch a 90-minute webinar held on October 21 2020 titled "Ensuring COVID-19 Vaccine Access, Safety, and Utilization: Building Vaccination Confidence in Communities of Color"; a transcript and slides are also available. Featured experts shared with policymakers and stakeholders the historical reasons for vaccine hesitancy in communities of colour, highlighted ongoing vaccination disparities, and discussed policy recommendations to build vaccine confidence and access in communities of colour.