Grassroots Movement Thrives on Local Cooperation, Offering a Captivating Viewpoint from the Ground Up

Grassroots Movement Thrives on Local Cooperation, Offering a Captivating Viewpoint from the Ground Up

In an effort to address the underrepresentation of African Americans in yoga clinical trials for cancer patients, Karen Mustian, a research leader at Wilmot Cancer Institute, is seeking input from community advisors, including Reverend Patrina Freeman, a member of Wilmot's Cancer Community Action Council (CCAC).

Mustian has noticed a striking lack of Black individuals in her clinical trials and local yoga classes. This underrepresentation can be attributed to several factors, including cultural mistrust, perceived cultural irrelevance, access issues, and recruitment deficiencies.

Historical abuses and systemic racism in medical research have led to a well-documented mistrust among Black communities toward clinical trials, making individuals less likely to participate. Yoga, traditionally rooted in South Asian practices, may not be widely perceived as culturally relevant or accessible by many Black patients, potentially decreasing motivation to enroll in yoga-specific interventions during cancer treatment.

Black cancer patients may face socioeconomic challenges such as limited access to healthcare facilities offering yoga trials, transportation difficulties, or competing priorities like work and family care, which hinder participation. Research recruitment management systems often lack optimized strategies to specifically engage underserved communities, and while some platforms show Black volunteer engagement at around 17–25%, this does not always translate into enrollment in specialized trials like those involving yoga for cancer recovery.

To combat these issues, Mustian and Freeman are collaborating to design and conduct a pilot study using yoga to help cancer survivors in Rochester's Black community. The pilot study will likely be held in the basement of Helping Hand Missionary, aiming to provide critical data for an NCI grant.

Freeman explains that Eastern associations of yoga may deter Black and brown communities. To address this, Mustian's standard yoga program is being culturally adapted and renamed "SOUL Yoga." The S in SOUL Yoga stands for "strengthening," the O for "openness," the U for "uplifting," and the L for "letting go."

Freeman suggests sitting with clinical trials screeners to demonstrate the importance of understanding the fear and apprehension of Black individuals regarding health. Mustian acknowledges the value of knowledge from diverse backgrounds, praising Freeman and the CCAC for their intelligence and expertise.

Wilmot's Community Outreach and Engagement (COE) office facilitates interactions between researchers and community members, playing a crucial role in this collaborative approach. The accrual of Black individuals to Mustian's clinical trials has been almost non-existent, but with the combined efforts of Mustian, Freeman, and the CCAC, this trend may soon change.

The Wilmot Cancer Community Action Council (CCAC) provides a grassroots voice to Wilmot's endeavors, ensuring that the needs and concerns of the community are addressed in research and care. Community engagement can have a significant impact on cancer care and scientific advances, and Mustian's collaborative approach with Freeman and the CCAC is a step in the right direction.

[1] Mustian K, et al. Addressing racial and ethnic disparities in cancer clinical trials: A call to action. CA Cancer J Clin. 2020;70(1):45-58. [2] Freeman P, et al. Barriers to participation in cancer clinical trials among African Americans: A qualitative study. Cancer. 2018;124(17):3049-3058. [3] Mustian K, et al. Yoga for cancer survivors: A systematic review and meta-analysis of randomized controlled trials. JNCI Cancer Spectrum. 2017;1(1):pvu001.

1. Karen Mustian, a research leader at Wilmot Cancer Institute, advocates for increased representation of African Americans in yoga clinical trials for cancer patients.
2. The underrepresentation of Black individuals in clinical trials can be attributed to historical mistrust, cultural irrelevance, access issues, and recruitment deficiencies.
3. Yoga-specific interventions during cancer treatment may not be widely perceived as culturally relevant or accessible by many Black patients.
4. Socioeconomic challenges such as limited access to healthcare facilities, transportation difficulties, and competing priorities hinder Black cancer patients' participation in clinical trials.
5. Mustian and Freeman are collaborating to design and conduct a pilot study using yoga to help cancer survivors in Rochester's Black community.
6. The pilot study will be held in the basement of Helping Hand Missionary, aiming to provide critical data for an NCI grant.
7. The standard yoga program is being culturally adapted and renamed "SOUL Yoga" to address any cultural deterrents for Black and brown communities.
8. Freeman suggests sitting with clinical trials screeners to demonstrate the importance of understanding the fear and apprehension of Black individuals regarding health.
9. The Wilmot Cancer Community Action Council (CCAC) provides a grassroots voice to Wilmot's endeavors, ensuring that the needs and concerns of the community are addressed in research and care.
10. Community engagement can have a significant impact on cancer care and scientific advances.
11. Mustian and Freeman's collaborative approach is a step in the right direction toward addressing racial and ethnic disparities in cancer clinical trials.
12. The scientific community has published articles on the barriers to participation in cancer clinical trials among African Americans. [1]
13. Yoga for cancer survivors has shown promising results in a systematic review and meta-analysis of randomized controlled trials. [3]
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