By David Sidibe
This is the eighth post in our series about how science is communicated and the consequences thereof.
Mistrust in the scientific and medical community is reaching a boiling point. You don’t have to look too far to find evidence of this fact, with the politicization of medicine and vaccines during the Covid-19 pandemic. While I would like to say that there is one cause of this mistrust, the reality is that this mistrust is multi-faceted and rooted in a history of careless and, quite frankly, horrific treatment of patients. The impact of mistrust of the medical community among people of color and people from underrepresented minority (URM) backgrounds is of particular concern. Ethnic, racial, and gender health disparities are prevalent in communities throughout the US. Current and historical events (see Tuskegee Syphilis Study, HeLa cells, and the AIDS epidemic for examples) have only further amplified the mistrust within URM communities.
Unfortunately, this mistrust is likely a contributing factor to the vastly higher mortality rates in URM populations. In its most recent healthcare report published in 2022, the Agency for Healthcare Research and Quality reported a more significant decline in life expectancy in Black populations as compared to White populations. Furthermore, URMs suffer more from numerous debilitating disorders (such as diabetes and prostate cancer). Social inequities, such as socioeconomic status, can amplify health disparities through making it harder to access healthcare in the first place. These health disparities can also have ramifications for achievement and professional success, creating a large achievement gap between URM and White populations. Is there a way to restore trust in the medical community to mend the URM health gap? What can doctors and scientists do to repair this trust and treat their patients with equity?
In this post, I will explore attempts by the medical and scientific community to engage members of the general population during medical treatment and research. I will assess how successful they have been at improving health outcomes and trust between medical/science and URM communities, and discuss the complications of evaluating the impact of community engagement. I hope to show that not only do these outreach efforts benefit URM communities, but can also contribute to scientific and medical advancement.
Medical Community Efforts to Solve Health Disparities
The medical community has begun to appreciate that environmental factors, known as social determinants of health (SDOH), play a major role in health outcomes in the US. SDOH include socioeconomic status, access to education and nutritional foods, and even the neighborhood one lives in. The majority of physicians recognize that health outcomes in the US cannot improve without addressing SDOH. Importantly, many studies reveal that URMs are more likely to suffer poorer health outcomes as a result of these social and economic inequities. Thus, the recognition of SDOH is essential to addressing health disparities in URM populations.
Completely eradicating these socioeconomic inequities is impractical and cannot be the only solution for solving health disparities in URM communities. An alternative approach is through the direct engagement of communities, with the goal of minimizing the effects that these social and environmental factors have on health outcomes. Historically, attempts to promote public health were done mostly without community engagement (ironic considering who they were trying to help). However, there has been a shift towards community engagement for addressing racial health disparities, as evidenced by a recent explosion in articles on “community engagement in public health”. As a result, numerous public health interventions employing community engagement have been implemented. These interventions consist of educational strategies, social support groups, and skill development to target health issues ranging from diabetes and cardiovascular disease to substance abuse disorders.
A comprehensive meta-analysis from 2015 found that some of these public health interventions could improve health behaviors (e.g. diet and physical activity) and outcomes (e.g. BMI, cholesterol levels) in URMs. The meta-analysis also found examples of community-wide health improvements due to these public health interventions. However, the authors are careful to note that these studies are subject to strong publication bias (the idea that only positive results, and not negative results, get published). This bias, along with other factors (e.g. control groups for these studies are often impractical to implement) makes it difficult to determine the overall effectiveness of these public health interventions on addressing racial health disparities.
Another approach to tackling health disparities is from the top-down, with changes coming from an organizational level. This approach has the benefit of making broader and more systemic changes. One example of an organization using a top-down approach is the Pediatric Innovation Initiative in the Center on the Developing Child at Harvard University. To commit to helping those from URM communities, the initiative created the Community Leadership Council (CLC) to ensure that advances in science will be used to “empower parents and communities to promote the healthy development of young children.” The CLC selected community leaders (e.g. advocacy leaders, parents, leaders of low-income-serving nonprofits) who are more aware of structural challenges and community-level resources, and can thus be more informed in making policy decisions. So far, the CLC has designs to “improve community-wide understanding of the impact of adversity on the developing brain and other biological systems'' and “mobilize community resources to reduce local sources of stress in families’ lives.”
There are many other “Community Leadership” organizations and academic councils that have been created with the same goal of improving disparities in URM communities (just type “Community Leadership Council” into Google). Unfortunately, tracking the effectiveness of these programs is much harder to come by. Often there is little in the way of statistics showing the impact of these councils on health outcomes (beyond testimonial and narrative evidence). Statistical evaluations of the impact of public health interventions can be done, as evidenced by improved health outcomes in HIV and ante-natal care clinics administered by the World Health Organization. However, following up with community members is a time-consuming process. Most of these councils rely on people who serve other roles in their schools/companies and are not compensated for their time, nor given a large enough budget to make an impact. In the future, more prioritization and accountability of these councils may be needed to ensure that these initiatives are actually improving health outcomes.
Efforts From the Scientific Community to Repair Mistrust
In addition to medicine, scientific research also suffers from implicit (and even explicit) bias against URMs. Historically,white supremacist scientists co-opted science to assert that Black people were “biologically inferior” in order to justify slavery and Jim Crow laws, even going so far as saying Black people were a different species. Without permission, these “scientists” would also collect and “study” the brains of non-White populations to prove their crackpot theories. Even though recent genetic studies have dismissed this notion of biological difference of races, some researchers today are still quick to attribute racial health disparities to biological factors, rather than social or environmental factors. While biological racism is not as common today, its consequences have led to distrust of science in URM communities.
The realm of biomedical research isn’t immune to the effects of scientific mistrust. The overarching goal of biomedical research is usually to understand the mechanisms for diseases that impact humans. From here, a clinical or translational researcher takes these research findings and tries to develop a drug or treatment to halt the progression of that disease. Unfortunately, clinical and translational research suffers from a strikingly low success rate, with only 10% of drug targets that enter clinical trials ever becoming treatments. For URMs, who suffer disproportionately from many medical conditions, improving the efficiency of these trials is of the utmost importance. Clinical research trials and human research studies are plagued by a lack of diversity and retention of URMs. Engaging marginalized communities has been effective for recruitment and retention in the past, as evidenced during the Covid-19 vaccine clinical trials. Engaging URM communities can increase the relevance of research for these communities, building trust and acceptance of scientific research and future medical treatments. Thus, engaging marginalized communities for clinical and translational research should be a no-brainer!
Unfortunately, there are numerous challenges to effective community engagement in research. Engaging community stakeholders (SHs) is a financial and resource-heavy challenge, requiring training and substantial hands-on experience. Furthermore, if interactions between researchers and SHs are not done correctly, it can leave communities feeling disenfranchised. This would defeat the purpose of community engagement in the first place. To fill this need to effectively engage communities, the Meharry-Vanderbilt Community-Engaged Research Core created the Community Engagement Studio (CES). The CES was designed to facilitate meetings between researchers and the SHs from the communities that researchers are studying. SHs (who are financially compensated) give feedback on how to improve study design for recruitment, retention, and dissemination of their findings. Specific feedback included changing recruitment materials to increase cultural sensitivity, addressing transportation barriers, and giving additional help to those who are uninsured.
To evaluate the effectiveness of the CES to influence clinical research, the creators designed a research study. 39% of the clinical studies included in the CES study were researching African American populations, thus providing a great opportunity for SHs from URM populations to improve the success of clinical research. The impact of the CES experience was positive for both SHs and researchers alike. Community SHs reported near unanimous support of the CES, feeling that their feedback would improve the project. Researchers saw benefits as well, with nearly 100% reporting feeling satisfied and that the feedback was appropriate. Furthermore, most researchers believed the input improved feasibility, recruitment, and plans for dissemination of the results. Due to its success, the CES program has become widely popular, with numerous universities and companies using and adapting it for their researchers.
Unfortunately, evaluating the impact of the CES program on improving clinical/translational research is difficult and will require more time. Furthermore, clinical research is notoriously difficult, and is dependent on many factors outside the control of SHs (e.g. the toxicity and side effects of the drug). However, improving the diversity and inclusiveness of these studies can only help. In the aforementioned CES study, SHs, including those from URM communities, felt a deep sense of pride and appreciation that their input was sought and received. SHs even expressed interest in receiving updates on the future status of the research projects they advised. These results show how just the act of engaging the community for input can increase investment and trust in the results. Trust is essential to the acceptance of scientific research, which is key to the uptake of medical treatments that can improve people’s lives. Thus, every effort should be made to continue engaging communities so that health equity, and trust in science, can be restored.
Conclusion
URM communities have long suffered from medical and scientific mistreatment, leading to the mistrust in doctors and scientists. This mistrust makes it harder to reach patients from URM populations, contributing to ongoing health disparities. With the recognition of the link between mistrust and health disparities, medical and scientific communities have engaged the general community to address the breach of trust and close the health gap. On a small scale, these community engagement efforts have shown some success in improving health behaviors, health outcomes, and trust in the medical and scientific community. However, evaluating the success of these efforts is plagued by a lack of appropriate impact assessments and follow-up studies. Furthermore, despite these efforts, large societal health gaps between White and URM populations are still prevalent. These efforts to engage URM communities must be continued and improved upon in order to narrow the health gap. Community engagement will not only improve health disparities, but can also show to URM communities that medical professionals and scientists are invested in their health and well-being. While impossible to erase the mistakes of the past, this investment in URM communities can build back the trust in medicine and science that has been absent for so long.