Fight CRC and the Blue Hat Foundation Caution Against Racial Targeting While Increasing Screening Services To Underserved Communities

In a May 4 STAT article, several members of Fight Colorectal Cancer’s Health Equity Committee and founders of the newly formed Association of Black Gastroenterologists and Hepatologists (ABGH) raised concerns regarding a study of nurse practitioners in training performing colonoscopies on patients living in the underserved areas surrounding John Hopkins in the Baltimore, Maryland area. In this case, the study took place in a community that has felt the pain of structural racism and having mid-level practitioners learn who to screen by recruiting underserved community members was not accepted by the community. In fact it was considered an inferior approach to serving an already vulnerable population.

“Buy-in within the communities we serve is critical,” said Anjee Davis, President of Fight CRC. “To build trust in any community, we need to assure community members that we are providing quality healthcare.”

In light of what the recent study brought out, Fight CRC is issuing this caution to funders and those distributing services to underserved communities:

  • There needs to be a commitment by health care leaders, administrators, and researchers to stop and really think about what you're doing and who you're serving to deepen understanding of the ethical issues that arise when working alongside communities of color. Before engaging in any study or trial, make sure the process is transparent to the patient and they’re in a place to make an educated choice.
  • After last summer's social justice spotlight, COVID-19’s exposure of health care disparities, and the passing of several prominent Black leaders due to colorectal cancer, there has been a large influx of funds and attention given to underserved communities at risk for colorectal cancer. There’s unprecedented funding and programming now supporting efforts to screen and treat colorectal cancer in Black communities. This is a good thing.
  • However, as more groups begin to offer screening services and tools for underserved communities, Fight CRC and our partners at the Blue Hat Foundation are sharing a strong cautionary note when addressing health disparities, health equity, and working in communities of color. To do this work, we must take the first step: explicitly acknowledge that race and racism factor into healthcare. Optics matter and community engagement is critical. 

In this case, researchers at John Hopkins likely did not set out to do something immoral, controversial, or racist. The study was led by a Black researcher who was looking at how to lower costs and get more people lifesaving screenings. However, the optics of this study are not good because there is a long history of mistrust between the Black community and John Hopkins. 

Patient advocate and founder of the Blue Hat Foundation Candace Henley also saw concerns with the trial and issues this caution to those offering screening services to underserved communities:

  • The issue is not a lack of quality trained gastroenterologists; the problem is the lack of financial investment in programs that support Black and Brown communities to have access to "quality," on-time, life-saving screenings for colorectal cancer—not low-cost colonoscopies performed by NPs who are not trained to detect abnormalities that even gastroenterologists state are difficult to detect. Is this really helpful or harmful?
  • Race-based research has had hundreds of years of lasting harm. Enough! It's time to stop viewing and using African Americans and other ethnic communities as low-bearing fruit of research projects.  
  • We have an uphill battle to build trust in the medical community, specifically the research community. A clear example of this is the lack of trust in the vaccinations for COVID-19. Communities of color have been on the receiving end of horrible experimentations and mistreatment in research and intentional health inequities within the healthcare system.
  • It's time for medical institutions, their faculty, and students to have mandatory community engagement training to understand the community's needs better versus the historical approach of providing what the medical community thinks is best for the community, which is what Dr. Kallo did. Sometimes well-intended actions can backfire.

As the voice of patient advocates, Fight CRC is urging those designing research studies and trials to engage advocates, cancer patients, and caregivers in the process. Get their input early and often. 

Historically, the cancer research community has faced challenges when it comes to building authentic relationships between researchers and the communities they serve. This has improved and innovations have taken place, but we must keep going. 

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