Study of medical mistrust a 'crucial first step' to improving equitable access to care
Click Here to Manage Email Alerts
Medical mistrust continues to be a major issue in the care of patients with multiple myeloma — particularly among Black individuals according to findings published in Cancer Medicine.
Strong patient-oncologist relationships and effective communication are essential to address and mitigate this, researchers concluded.
In the qualitative study, researchers recruited 21 racially concordant pairs of patients with multiple myeloma and their caregivers (11 Black or African American and 10 white) from UNC Lineberger Comprehensive Cancer Center between November 2021 and April 2022.
Participants responded to a sociodemographic survey and completed a 60- to 90-minute semi-structured interview.
Results showed Black or African American participants to be more knowledgeable about historical events — such as the U.S. Public Health Service Untreated Syphilis Study at Tuskegee — than white participants. They also felt a more enduring emotional burden from these events.
Both Black/African American and white dyads emphasized the important role of patient-provider relationships in fostering trust in the medical system.
“The implications of our findings extend beyond individuals with multiple myeloma,” researcher Shakira J. Grant, MBBS, MSCR, health policy fellow with the ASH/AAAS Science and Technology Policy Fellowship program and former assistant professor of medicine in the division of hematology at The University of North Carolina at Chapel Hill, told Healio. “Medical mistrust is a widespread issue that affects many communities of color across various health conditions. My hope is that this study encourages others to appreciate the value of qualitative approaches — such as semi-structured and unstructured interviews or focus group discussions — to deeply understand these topics.”
Healio spoke with Grant about the findings and what oncologists can do to identify and address medical mistrust.
Healio: How prevalent is medical mistrust in health care?
Grant: Medical mistrust has deep historical roots — particularly linked to unethical research practices such as the U.S. Public Health Service's Tuskegee Study of Untreated Syphilis in the Negro Male and the use of Henrietta Lacks' cells without her consent, which led to the creation of the immortal HeLa cell line. These events have disproportionately impacted Black populations, fostering a long-standing distrust/mistrust in the health care system.
This issue remains a significant problem. During the COVID-19 pandemic, we saw the effects of this mistrust manifest as vaccine hesitancy among Black or Latinx individuals and in other communities of color. Additionally, disparities in access to care resulted in higher COVID-19 mortality rates for these groups.
I've frequently heard from my patients of color about their apprehensions regarding health care. They often express difficulty in finding providers who look like them and share feelings of being dismissed or not being heard or ‘seen’ by their health care providers.
Healio: What prompted you to conduct this study?
Grant: I kept hearing concerns from my Black patients about research and their treatment by the health care system. These personal stories highlighted a pervasive mistrust that impacted their willingness to participate in clinical trials and their overall experience with care.
Additionally, there is substantial quantitative data showing significant disparities in multiple myeloma. Black individuals are twice as likely to develop multiple myeloma and twice as likely to die of the disease. However, studies have shown that when Black patients receive equal access to care, their survival is comparable with, or even better than, that of white patients.
Instead of solely relying on quantitative data, I aimed to listen directly to patients and caregivers to gain a more nuanced understanding of access issues, including trust in the medical system. This qualitative approach allowed me to delve deeper into the personal experiences and barriers faced by these individuals, providing insights that numbers alone cannot convey.
Healio: How did you conduct this study?
Grant: The study utilized a semi-structured interview format to gather data from patients and their caregivers via Zoom. We analyzed interview transcripts to identify key themes and summarize the main findings. This allowed us to capture detailed, firsthand insights into the experiences and perspectives of patients and caregivers.
Healio: What did you find?
Grant: Black participants often had a deep, transgenerational knowledge of events that have led to mistrust. Many cited stories passed down from parents and grandparents about the mistreatment of Black individuals in health care, particularly in research contexts. In contrast, among white dyads, some had knowledge of these historical events, while others either had no knowledge or believed medical mistrust and racial discrimination were no longer issues today. Some white participants expressed empathy or sympathy toward Black individuals affected by discrimination but acknowledged it did not impact their own lives.
Across all dyads, trust in their oncologist was seen as crucial — particularly when considering participation in clinical trials. However, Black participants more frequently discussed the need to educate themselves to be ready to interact with health care providers. They felt that without proactively learning about their cancer diagnosis and treatment options, and bringing these topics up with their doctors, they might not receive the same opportunities or treatment options as white patients. This concern was especially prominent regarding access to clinical trials and knowledge about stem cell transplants or the side effects of cancer drugs.
Healio: What are the potential implications of this study?
Grant: I see this study's findings as a crucial first step in understanding the complexities behind why some populations struggle to access the cancer care they need. It highlights that medical mistrust and racial discrimination within the health care system remain significant barriers. These issues often are overlooked when considering how to ensure timely and quality cancer care for all, regardless of race, socioeconomic status or other identities.
Further, it is essential to ensure representation from communities of color when addressing medical mistrust. By involving those directly affected in the conversation and solution-finding process, we can develop more effective strategies to build trust and improve health care access and outcomes for diverse populations.
Healio: What strategies can help overcome medical mistrust?
Grant: As one of our study participants aptly stated, “Trust takes years to gain and a second to lose.” This quote underscores the challenge of building trust and the need for long-term commitments to overcoming medical mistrust and racial discrimination.
First, health care systems must openly acknowledge that racial discrimination remains a significant issue. Next, efforts should be made to make health care systems more trustworthy. This involves transparency, accountability and consistent actions that demonstrate a commitment to equity and fairness.
We need to diversify the health care workforce. Patients need to see providers who are dependable and share similar backgrounds.
Community engagement is crucial. Researchers and health care providers need to meet people where they are, listen to their concerns and involve them in drafting solutions.
Lastly, we need to support initiatives that aim to reduce disparities in health care access. We need to recognize that medical mistrust is a symptom of a larger issue — systemic racism. We need to develop equity-centered policies that not only tackle medical mistrust and racial discrimination in health care, but also address the underlying elements of systemic racism.
Reference:
For more information:
Shakira J. Grant, MBBS, MSCR, can be reached at grantlabmm@gmail.com.
Collapse
Healio Interviews
Click Here to Manage Email Alerts