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ASH 2023: How Willing Are Black Myeloma Patients to Participate in Clinical Trials?
Posted: Dec 18, 2023
ASH 2023: How Willing Are Black Myeloma Patients to Participate in Clinical Trials? image

Clinical trials that are representative of all patients are essential to ensure that treatments are effective for everyone.

In the U.S., 6.5% of cancer patients participate in clinical research. Of those participants, only 4.5 % identify as Black or African American.

Given that multiple represents one of the blood cancers where the most significant disparity in terms of incidence and survival is noted, Black and African Americans are twice as likely to get and die from myeloma. Yet, only 4% of clinical trial enrollees are Black or African American.

Understanding factors influencing participation is critical for recruitment. Eligibility criteria, medical mistrust, trial location, and communication are all known barriers that contribute to low trial enrollment and underrepresentation of Black and African Americans in clinical research.

One area that remains underreported is the willingness of Black persons to participate in clinical research.

Are Black and African Americans willing to participate in clinical trials?

Study Details

At the recent ASH meetings, Shakira Grant, MD, presented Abstract 1065 entitled "to Represent a Black Point of View": Willingness of Black Persons with Multiple Myeloma to Participate in Clinical Trials. The objective of the study was to understand factors influencing the willingness of Black and African American patients diagnosed with multiple myeloma to participate in clinical trials.

The study was conducted between August 2021 and February 2022. There were 23 participants divided into three subgroups: those with and without prior clinical trial enrollment and one group with a mixture of trial experience.

The research team conducted six different focus groups. Three groups consisted of 13 participants without trial experience, two with 7 participants with prior clinical trial experience, and one with a mix of trial experience. Out of the focus groups, three main themes emerged: 

  • Awareness of clinical trials
  • Perceptions about clinical trials 
  • Desire to help others
  • Perceived benefits 

Awareness

Both trial participants and non-participants showed different levels of awareness. Some participants were aware of clinical trials but had no idea of how they were conducted. Others were hearing and reading about trials and learning what goes on with them. Meanwhile, others had never heard of them and were unsure what the doctor was talking about. 

Perceptions

Wanting to live was the core motivation influencing perceptions around clinical trials. Wanting to live is why those who have participated in a clinical trial chose to participate in one. Participants noted wanting to live not just for themselves but also for their families. 

Diversity in Clinical Trials

Participants acknowledge the historical impact of unethical research in the Black community. They underscored the significance of Black representation in clinical trials—representing the Black point of view and contributing to science. They want to ensure the Black voice is heard and represented.

Desire to Help Others

Both clinical trial and non-clinical trial participants shared a common desire to contribute and assist others. The participants stated it was essential to help the next generation of patients with multiple myeloma and contribute to science. They realize that their access to their current treatment came from someone participating in a trial before them.  

Conclusions

The study concludes that Black persons with myeloma are willing to participate in trials, irrespective of their prior trial experience. The motivation behind this willingness is primarily driven by the desire for diverse representation, to live longer, and commitment to helping others diagnosed with myeloma in the future. 

Participants felt they would trust their physician more if they talked about a trial upfront and often. Participants also want to hear directly from patients who have had experience with clinical trials directly. They also want to hear both the good and bad experiences of patients who have participated in trials

As we look to the future, there is a need for enhanced educational initiatives to address the gaps in awareness and perceptions about clinical trials.

To ensure equitable access to clinical trials for Blacks and African Americans, it is crucial to implement tailored efforts encouraging healthcare providers to adopt an equity-centered approach when offering clinical trials, especially to individuals from underrepresented racial-ethic backgrounds.  


ASH 2023 Resources

Would you like to watch ASH 2023 myeloma research interviews from the investigators themselves? Click "ASH 2023" here: HealthTree University Conference Coverage

To read other ASH 2023 articles, click here: HealthTree 2023 ASH Articles 

The author Valarie Traynham

about the author
Valarie Traynham

Valarie Traynham has been a myeloma survivor since 2015. Wanting to be a source of support, provide patient education and encouragement to help others along their myeloma journey, she is a volunteer myeloma coach, myeloma support group leader and patient advocate. She enjoys being outdoors, reading, and trying new recipes.

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