Someone’s access to quality health care, health messaging, or wellness should not depend on their social or economic status. One way to correct these historical and systemic inequalities is for scientists and researchers to use a health equity lens as they plan and conduct research. A health equity lens can also affect the ways that research findings and data are disseminated and shared with audiences.
In recognition of the serious barriers that exist, a number of organizations and agencies are focusing on health equity, which the Centers for Disease Control (CDC) defines as “the state in which everyone has a fair and just opportunity to attain their highest level of health.”
The CDC explains that a health equity lens means “intentionally looking at the potential positive and negative impacts of proposed messages.” One key principle is democratizing the research experience and communications to include input from the audiences that we want to reach.
In “Equity Science, Health Equity, and Big Data,” an online course offered by the University of Texas at Austin’s Center for Health Communication, Dr. Ashani Johnson‑Turbes explores the principles of health equity science and offers context and practical advice for scientists and communicators.
Striving for equity is now an official policy of the US government. Dr. Johnson‑Turbes refers to an executive order issued by the White House in 2021. President Joe Biden’s executive order reads, “For too many, the American Dream remains out of reach. . . . Entrenched disparities in our laws and public policies, and in our public and private institutions, have often denied that equal opportunity to individuals and communities.”
When it comes to health disparities, the executive order is clear:
“The consistent and systematic, fair, just, and impartial treatment of all individuals, including individuals who belong to underserved communities that have been denied such treatment, such as Black, Latino, and Indigenous and Native American persons, Asian Americans and Pacific Islanders and other persons of color; members of religious minorities; lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI+) persons; persons with disabilities; persons who live in rural areas; and persons otherwise adversely affected by persistent poverty or inequality.”
How do scientists, medical writers, and health communicators act in ways that advance equity and reduce systematic barriers?
Health equity science is an emerging body of research described by Johnson‑Turbes as “the study and practice of efforts to advance equity across social and behavioral science (and in the real world). It is the rigorous, systematic, and methodologically diverse process to guide, collect, and organize knowledge that is focused on inclusion and experience of people, especially historically marginalized or minoritized people, for the scientific generation of knowledge, and more precise evidence to create and promote equitable (fair and just) programs, campaigns, policies, systems of access and power for all people.”
The commitment to fairness and justice is at the core of equity science, which focuses on removing barriers and creating equitable access to research and health care.
In the science equity course, Johnson‑Turbes shares two examples of health communication campaigns she worked on. The first was a campaign to raise awareness about interstitial cystitis (a painful bladder condition). “The work did not involve hearing from the people with the condition, did not involve inequities or disparities in access to care for people with the condition,” says Johnson‑Turbes. “The purpose was to raise public awareness but not fairness in diagnosis or care for diverse people with the condition. It didn’t try to understand or change the systems to provide fair and unbiased care.”
In contrast, the doctor worked on a project during the pandemic to provide emotional health support resources to underserved groups. The researchers employed culturally responsive evaluations and started with questions about what systems and organizations needed to change to better serve the intended audiences. They used focus groups, social media, and “big data” to engage and serve diverse audiences.
The second study was an example of equity science.
Inclusive and equitable (I&E) research is the practice of centering the people who are researched. Rather than simply being “subjects,” they are included, and their voices and experiences are honored in all steps of the research process. This branch of research, says Johnson‑Turbes, is “participatory, emancipatory, and democratic.” There are 3 overarching principles of I&E research.
Examine your position and engage in self-reflection. Researchers should acknowledge their position of privilege or disadvantage and think about how it affects the research. This means assembling culturally diverse research teams and including broad perspectives and asking teams to examine and address implicit biases. Studies should include questions about how intersectional identities influence worldviews and how people receive health messages.
Conduct work that centers culture and engages community. For example, researchers can build community advisory boards, interview community members, and hold focus groups. This type of community engagement can be time-consuming and expensive, but it allows for more participation from people who will enrich the data. Communicators should use culturally centered approaches and communication channels, including reaching audiences where they are, whether that is via the web, social media, radio, or through community organizations.
Democratization and systems focus. Researchers should strive to share what they are learning with audiences and other stakeholders. The focus should be on systems change and understanding how inequities are embedded in policies. Large amounts of data can help pinpoint where inequity exists. When gathering data, use culturally responsive and equitable evaluation, pay participants, and consider expanding authorship to people with lived experience.
Good communication can work to reduce inequities if messaging is inclusive, accessible, and designed with equity in mind.
Health communicators who use an equity lens are learning how to create and advocate for communications, policies, messaging, and research that avoid perpetuating inequity.
For example, it is important to understand the ways that racist and discriminatory policies have contributed to social and health inequities. Health communication that is grounded in equity recognizes that policies, programs, and information can be used to either perpetuate or reduce inequity. An emphasis on sharing linguistic and culturally appropriate information can help democratize the process. Public health policies succeed when they are designed and implemented to include diverse communities.
Equity science promotes rigor in the research process by pushing scientists to use methods that generate data from diverse populations. Data gathered in this way can help shape policies, programs, and systems.
Equity science demands action to reprioritize and eliminate imbalances in power, education, and health. It also “requires amends,” says Johnson‑Turbes: “As a society, we need to transform the way we conduct scientific research to center the lived experiences of people to understand people and society and make amends to address historical injustices in programs and policies.”
A failure to embrace health equity practices risks the continuation, or worsening, of the unacceptable health disparities that exist today.
In her explanation of why equity science is a necessity in today’s world, Dr. Johnson‑Turbes shares a quote from the poet and memoirist Maya Angelou:
“Do the best you can until you know better. Then, when you know better, do better.”