Medical Mistrust
Medical mistrust is a significant barrier to health care for communities of color in the U.S. Due to a history of systemic racism and ongoing discriminatory experiences with the health care system, mistrust is particularly prevalent among Black Americans. Trust is essential to robust patient-doctor relationships. It is also a foundational element in a patient’s decision-making process. Mistrust, on the other hand, is an absence of trust that health care providers and organizations genuinely care for patients’ interests, are honest, practice confidentiality, and have the competence to produce the best results.1 Mistrust in the health care system negatively influences health practices, resulting in poor behaviors such as noncompliance with medications and treatments, decreased engagement with screening and preventative measures, low satisfaction with care, and lower quality of life.
For Black Americans, medical mistrust stems from a history of medical exploitation. From the Tuskegee Study to the role that enslaved Black women played in the development of gynecology, American medicine has a long history of subjecting Black Americans to abuse, experimentation, and mistreatment.
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Overview
Tuskegee Study Spotlight: In 1932, 600 Black men—399 syphilis infected and 201 non-syphilis infected—were part of an experimental group to track the disease progression of syphilis in Black men. The participants in the study were recruited under the pretense of free medical care. At the study’s onset, there were no proven treatments for the disease. However, as penicillin emerged as the standard treatment, the medication was withheld from Tuskegee Study participants. As the study progressed, the men went blind, insane, and experienced severe health problems. Further, many participants passed away, and the disease was passed on to several spouses and children who contracted it at birth. The experiment is remembered today as a primary example of the unethical, non-consensual, and cruel exploitation that Black people have endured in furtherance of medical advancements in the United States.
Mothers of Gynecology Spotlight : In 1844, Dr. James Marion Sims performed gynecological experimentation on enslaved women in Alabama. The experiments were performed without anesthesia, pain relief, and, most importantly, consent. The bodies of Black women were violated and abused in pursuit of gynecological innovation. For his medical discoveries, Dr. Sims was originally credited as the “father of modern gynecology.” Today, the Black women subjected to his abuse are recognized as the “Mothers of Gynecology.”
Source: The National Archives. Link: https://catalog.archives.gov/id/956091
Source: NPR (2022).
Link: https://www.npr.org/2022/03/28/1089062082/statuecelebrates-mothers-of-gynecology-at-black-womensbirthing-conference
Pictured: The Mothers of Gynecology Monument created by Michelle Browder, showcased at her museum in Montgomery, Alabama.
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In addition to a sordid history of racial abuse in the medical industry, personal experiences with the health care system also contribute to a culture of mistrust within the Black community:
• Half of all medical students and residents were found to have held one or more false beliefs about supposed biological differences between Black and white patients. These beliefs may inform medical judgments, thus contributing to racial disparities in treatment.2
• Black patients are systematically undertreated for pain. 3
• Seventy percent of Black Americans say the system treats them unfairly, and 55% say they distrust it. 4
• Physicians are less likely to perceive Black patients as being honest regarding their symptoms. 5
• Medical practitioners’ perceptions of patients (i.e., intelligence, the likelihood of risk behavior, and adherence to medical advice) are influenced by a patient’s racial and socioeconomic characteristics. 6
Health Misinformation and Susceptibility
Health misinformation is false or misleading information about health-related information that can undermine the judgments and behaviors of populations. Misinformation is so pervasive and consequential to patient decision-making that in 2021, the U.S. Surgeon General declared it a direct threat to public health.7 Indeed, misinformation undermines public health by making patients skeptical of guidelines and recommendations put forth by health experts. This leads individuals to engage in unhealthy behavioral choices, such as delaying treatment or care or abstaining altogether, which can result in widespread effects like disease outbreaks, hospitalizations, and mortality.8 Misinformation disproportionately impacts underserved populations, such as patients of color, the digitally disadvantaged, and those with poor health literacy skills.9 Patients in these populations are particularly susceptible to misinformation, meaning they are more likely to perceive false information as accurate and make health decisions based on that information.
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For Black patients, misinformation builds upon intergenerational mistrust and personal experiences with discrimination and bias in health care interactions. Those predisposed toward skepticism of the health care system are more likely than others to be attracted to claims that appear to go against official medical sources. 10 This is due to a phenomenon called confirmation bias . Confirmation bias suggests that people tend to find and evaluate information by looking for evidence consistent with their beliefs.
Therefore, information that challenges the legitimacy of medical institutions is more readily accepted by individuals and populations that already experience low levels of trust in them. Moreover, research shows that underserved and racially diverse populations often have low health literacy rates,11 suggesting that these demographics are especially susceptible to misinformation. Health literacy refers to how individuals find, comprehend, and use information to inform health-related decisions for themselves and others. Those with high levels of health literacy are associated with higher engagement with institutional medical websites, are more capable of accurately assessing source credibility, and are less likely to share misinformation. Meanwhile, those with lower levels of health literacy rely more on television or social media for their health information. This group is also less apt to discern online misinformation due to an inability to assess the credibility of sources or content.12
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Source: BBC Bitesize. Link: https://www.bbc.co.uk/bitesize/articles/zcr8r2p
Social Media and Misinformation
As a result of the COVID-19 pandemic, today, people increasingly rely on the internet, and more specifically, social media, for public health information and support. The speed at which misinformation spreads on the internet makes it exceptionally difficult to correct. One reason for the circulation of such an abundance of false health information online is the lack of barriers to posting unreliable information. A 2019 study showed that most misinformation on social media originated from individuals without connections to or affiliations with academic institutions.13 Moreover, the COVID-19 pandemic introduced an influx of preprint medical literature. Preprint medical literature is that which bypasses the often-lengthy peer review process. The influx of preprint literature allowed for the rapid sharing and dissemination of information that had yet to be deemed accurate, thus contributing to widespread confusion about best practices, treatments, and causes of COVID-19.14
An obstacle to correcting misinformation is the level of exposure to false information that individuals experience on social media platforms. Exposure to misinformation is an incidental consequence of participation in social media. However, user conversations surrounding misinformation amplify the exposure and lifespan of false health information, even further complicating and reinforcing the issue. Additionally, social media posts often employ negative or opinionated tones that induce fear and anxiety, fueling further mistrust in the health care system.
Social media poses extreme risks to the spread of misinformation. As the racial group that uses social media more than all others,15 Black Americans are particularly vulnerable to online health misinformation. In 2019, a study found that Black individuals participate in social media at greater rates than other racial groups, are among the most engaged racial groups on social media, and consume more media in total than non-Black audiences.16 Among the most used social media platforms spreading health misinformation are Twitter, YouTube, Facebook, Instagram, and TikTok.17 The following examples showcase the different ways that misinformation can be disseminated on various social media platforms:
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WhatsApp is a popular messaging platform amongst communities of color, particularly for immigrant and diaspora communities. A 2018 study found that medication claims on WhatsApp were potentially misleading most of the time or false almost one-third of the time. Researchers found that because it is a messaging application, there is an implicit standard of trust between those sharing messages. They posit that this trust within social groups may reduce the perceived risk of misinformation because individuals may underestimate their friends’ and family’s potential to spread false or misleading information.18
Although Black Americans make up just 14% of the total U.S. population, they accounted for 28% of all Twitter users in 2018. 19 A study conducted by the Color of Change and the Harvard Kennedy School found that misinformation during the COVID-19 pandemic spread throughout “Black Twitter” 20 due in part to cultural-linguistic differences. For example, algorithms intended to identify and remove health misinformation did not detect posts that referred to the coronavirus as “rona.” 21 Failing to recognize posts circulating in Black social media circles left the door open to the dissemination of harmful misinformation.
Amidst the COVID-19 pandemic, a study by The Markup’s Citizen Browser Project found that official information about the coronavirus reached fewer Black people on Facebook than other racial demographic groups. 22
Panelists shown an HHS PSA Panelists shown COVID-related PSAs
Source: The Markup (2021). Link: https://themarkup.org/citizen-browser/2021/03/04/official-information-about-covid-19-is-reaching-fewerblack-people-on-facebook
The digital age has created many new ways to spread misinformation, which can significantly impact public health. Because the Black population is overrepresented on social media, particularly susceptible to believing misinformation, and excluded from reliable health information by certain algorithms, the spread of misinformation on social media presents real dangers to the collective health of Black Americans.
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1. WhatsApp
2. Twitter
3. Facebook
Asian Latino White Multiracial Black
0.9% 1.7% 4.5% 3.1% 1.5% 9.5% 6.7% 6.6% 4.7% 3%
Recommendations: Establishing Trust in Health Communications
To improve health outcomes in the Black community, building trust between patients and health care providers and between patients and public health experts is critical. Building a culture of trust requires a combination of actions that mitigate the creation and dissemination of medical misinformation, empower Black patients through digital health literacy, and reduce racial biases between patients and providers.
To establish trust between the Black community and the U.S. health care system, the following recommendations should be considered:
1. Pass the Promoting Public Health Information Act (H.R. 1004/S. 406)
The Promoting Public Health Information Act is intended to counter the threat of misinformation and disinformation on public health. If passed, it would support the Department of Health and Human Services (HHS) and other public health stakeholders to communicate effectively during public health emergencies and combat health misinformation more generally. It would establish a Public Health Information and Communications Advisory Committee and fund the development of evidence-based initiatives to educate the public. Passing this vital piece of legislation would be instrumental in combatting health misinformation.
2. Improve Digital Health Literacy in the Black Community
Equitable access to internet services and digital skills programs are foundational to increasing digital literacy skills in Black communities. Furthermore, as social media becomes increasingly central to the spread of health information, curriculums for Black students must include trainings on how to discern credible sources from those that are not.
3. Increase Representation in the Medical Field
Trust is foundational to healthy patient-provider relationships. Numerous studies show that trust between patients and providers is more readily developed when both people share a common race or ethnicity.23 A 2023 study found that every 10% increase in Black primary care providers was associated with an increase in life expectancy by about thirty days, as well as a 1.2% lower disparity between Black and white individuals in all-cause mortality.24 Bias and discrimination are substantial barriers to health equity. When a provider can see patients for more than just their racial and socioeconomic characteristics, they can more accurately treat them. Moreover, patients are more likely to believe that the provider has their best interest in mind, positively impacting their overall health behaviors and adherence to medical advice and treatment.
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Conclusion
Disseminating reliable and accurate information about health matters is critical to public health. Health disparities have always existed for Black Americans, but online health misinformation threatens to worsen the collective health behaviors and outcomes for the Black community. Misinformation via online platforms plays off the deep mistrust the Black community already feels toward medical institutions, amplifying existing health disparities. Combating misinformation and establishing trust between Black patients and the medical community is essential to ameliorating racial health disparities.
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References
1 Scharff, Darcell P., Katherine J. Mathews, Pamela Jackson, Jonathan Hoffsuemmer, Emeobong Martin, and Dorothy Edwards. “More than Tuskegee: Understanding Mistrust about Research Participation.” Journal of Health Care for the Poor and Underserved 21, no. 3 (August 2010): 879–97. https://doi.org/10.1353/hpu.0.0323
2 Hoffman, Kelly M., Sophie Trawalter, Jordan R. Axt, and M. Norman Oliver. “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs about Biological Differences between Blacks and Whites.” Proceedings of the National Academy of Sciences 113, no. 16 (April 19, 2016): 4296–4301. https://doi.org/10.1073/pnas.1516047113
3 Meghani, Salimah H., Eeeseung Byun, and Rollin M. Gallagher. “Time to Take Stock: A Meta-Analysis and Systematic Review of Analgesic Treatment Disparities for Pain in the United States.” Pain Medicine (Malden, Mass.) 13, no. 2 (February 2012): 150–74. https://doi.org/10.1111/j.1526-4637.2011.01310.x
4 Fletcher, Michael A. “Poll: Black Americans See a Health-Care System Infected by Racism.” National Geographic, October 16, 2020. https://www.nationalgeographic.com/history/article/black-americans-see-health-care-system-infected-racismnew-poll-shows
5 Eack, Shaun M., Amber L. Bahorik, Christina E. Newhill, Harold W. Neighbors, and Larry E. Davis. “Interviewer-Perceived Honesty Mediates Racial Disparities in the Diagnosis of Schizophrenia.” Psychiatric Services (Washington, D.C.) 63, no. 9 (September 1, 2012): 875–80. https://doi.org/10.1176/appi.ps.201100388
6 Ryn, M. van, and J. Burke. “The Effect of Patient Race and Socio-Economic Status on Physicians’ Perceptions of Patients.” Social Science & Medicine (1982) 50, no. 6 (March 2000): 813–28. https://doi.org/10.1016/s0277-9536(99)00338-x
7 Southwell, Brian G., Jessica Otero Machuca, Sabrina T. Cherry, Melissa Burnside, and Nadine J. Barrett. “Health Misinformation Exposure and Health Disparities: Observations and Opportunities.” Annual Review of Public Health 44 (April 3, 2023): 113–30. https://doi.org/10.1146/annurev-publhealth-071321-031118
8 Goldwire, Micheline Andel, Steven T. Johnson, Maha Abdalla, Ashish Advani, Allison Bernknopf, Angela Colella, Heather A. Kehr, et al. “Medical Misinformation: A Primer and Recommendations for Pharmacists.” JACCP: JOURNAL OF THE AMERICAN COLLEGE OF CLINICAL PHARMACY 6, no. 5 (May 2023): 497–511. https://doi.org/10.1002/jac5.1760
9 Ibid.
10 Scherer, Laura D., Jon McPhetres, Gordon Pennycook, Allison Kempe, Larry A. Allen, Christopher E. Knoepke, Channing E. Tate, and Daniel D. Matlock. “Who Is Susceptible to Online Health Misinformation? A Test of Four Psychosocial Hypotheses.” Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association 40, no. 4 (April 2021): 274–84. https://doi.org/10.1037/hea0000978
11 Christy, Shannon M., Clement K. Gwede, Steven K. Sutton, Enmanuel Chavarria, Stacy N. Davis, Rania Abdulla, Chitra Ravindra, Ida Schultz, Richard Roetzheim, and Cathy D. Meade. “Health Literacy among Medically Underserved: The Role of Demographic Factors, Social Influence, and Religious Beliefs.” Journal of Health Communication 22, no. 11 (November 2017): 923–31. https://doi.org/10.1080/10810730.2017.1377322
12 Southwell, Brian G., Jessica Otero Machuca, Sabrina T. Cherry, Melissa Burnside, and Nadine J. Barrett. “Health Misinformation Exposure and Health Disparities: Observations and Opportunities.” Annual Review of Public Health 44 (April 3, 2023): 113–30. https://doi.org/10.1146/annurev-publhealth-071321-031118
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13 Wang, Yuxi, Martin McKee, Aleksandra Torbica, and David Stuckler. “Systematic Literature Review on the Spread of Health-Related Misinformation on Social Media.” Social Science & Medicine 240 (November 1, 2019): 112552. https://doi.org/10.1016/j.socscimed.2019.112552
14 Goldwire, Micheline Andel, Steven T. Johnson, Maha Abdalla, Ashish Advani, Allison Bernknopf, Angela Colella, Heather A. Kehr, et al. “Medical Misinformation: A Primer and Recommendations for Pharmacists.” JACCP: JOURNAL OF THE AMERICAN COLLEGE OF CLINICAL PHARMACY 6, no. 5 (May 2023): 497–511. https://doi.org/10.1002/jac5.1760
15 Mastantuono, Molly. “Why Social Media Is a Source of Strength for Black Americans.” Bentley University, February 24, 2023. https://www.bentley.edu/news/why-social-media-source-strength-black-americans
16 Florini, Sarah. “Beyond Hashtags.” NYU Press (blog). Accessed May 12, 2023. https://nyupress.org/9781479813056/ beyond-hashtags
17 Goldwire, Micheline Andel, Steven T. Johnson, Maha Abdalla, Ashish Advani, Allison Bernknopf, Angela Colella, Heather A. Kehr, et al. “Medical Misinformation: A Primer and Recommendations for Pharmacists.” JACCP: JOURNAL OF THE AMERICAN COLLEGE OF CLINICAL PHARMACY 6, no. 5 (May 2023): 497–511. https://doi.org/10.1002/jac5.1760
18 Kuru, Ozan, Scott W. Campbell, Joseph B. Bayer, Lemi Baruh, and Richard S. Ling. “Reconsidering Misinformation in WhatsApp Groups: Informational and Social Predictors of Risk Perceptions and Corrections.” International Journal of Communication 17, no. 0 (March 13, 2023): 23. https://ijoc.org/index.php/ijoc/article/view/19590
19 Nielsen. “Nielsen Examines the Digital Habits and Impact of Black Consumers.” Accessed May 12, 2023. https://www.nielsen.com/news-center/2018/nielsen-examines-the-digital-habits-and-impact-of-black-consumers/
20 Black Twitter: A word to describe the collective identity of black users on Twitter
21 Collins-Dexter, Brandi. “Canaries in the Coal Mine: COVID-19 Misinformation and Black Communities.” Shorenstein Center (blog), June 24, 2020. https://shorensteincenter.org/canaries-in-the-coal-mine/
22 https://themarkup.org/newsletter/citizen-browser/official-info-on-covid-19-is-reaching-fewer-black-people-on-facebook
23 Huerto, Ryan. “Minority Patients Benefit From Having Minority Doctors, But That’s a Hard Match to Make.” University of Michigan Medicine, March 31, 2020. https://www.michiganmedicine.org/health-lab/minority-patients-benefit-havingminority-doctors-thats-hard-match-make
24 Snyder, John E., Rachel D. Upton, Thomas C. Hassett, Hyunjung Lee, Zakia Nouri, and Michael Dill. “Black Representation in the Primary Care Physician Workforce and Its Association With Population Life Expectancy and Mortality Rates in the US.” JAMA Network Open 6, no. 4 (April 14, 2023): e236687. https://doi.org/10.1001/jamanetworkopen.2023.6687
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