September 2020: Pull Up A Seat to Address Clinical Trials and Healthcare Practices

“Fighting is the last term I want to think about when going to a healthcare professional.” – Dr. Arnethea Sutton

The Tigerlily Foundation and Guiding Researchers and Advocates for Scientific Partnerships (GRASP) launched a monthly conversation series entitled #KnowMoreDisparities and #PullUpASeat. Our first conversation was held in September 2020 on the topic of addressing clinical trials and healthcare practices.  Facilitated by our keynote speaker, Dr. Arnethea Sutton, a postdoctoral fellow at Virginia Commonwealth University School of Medicine, and patient experts Sheila McGlown, Jamil Rivers, Angela Baker, Roberta Albany, Nunny Reece and Shonte Drakeford, the conversation started with the definitions of biases and ended with a charge to change the impact of bias on healthcare treatment for Black women.

Dr. Sutton’s presentation provided present day examples of bias overheard by medical students and physicians alike. According to Merriam-Webster Dictionary, a bias is “an inclination of temperament or personal outlook of sometimes unreasoned judgment.”[1] Dr. Sutton challenged the audience to move past the term – bias rather referring to the unequal treatment of Black patients as racism.

Implicit bias is a feel good term to make others feel ok which sounds passive yet the impact can be fatal. – Dr. Arnethea Sutton

What is unconscious is learned and drenched in stereotypes. This unconscious learning has led to health disparities. Health disparity is the higher burden of illness, injury, disability, or mortality experienced by one group relative to another. Amongst studies that observed the relationship between implicit bias and outcomes, nearly 43% of studies found that increased implicit bias equaled disparities in treatment recommendations, empathy and pain management. Of the studies that assessed implicit bias and patient-provider interactions, 100% of studies found a stronger implicit bias led to a decrease in poorer patient provider communication. Dr. Sutton’s presentation was supported by data and outlined the way forward for healthcare professionals which includes implicit bias training, chief equity/diversity officers, a diversified workforce pipeline, patient-level interventions and provider-level interventions.

Jamil Rivers, Founder of The Chrysalis Initiative, Chief Financial Officer of Education Works and a Tigerlily Foundation Angel Advocate, shared her personal story and reflections from Dr. Sutton’s presentation stating that “at this point we can’t train racism away but you [healthcare providers] should respect me”. Jamil suggested an accountability system for health equity plans that demonstrates goals are being met prior to receiving grant and policy funding.

“My life should not be contingent on racism from a person”, Jamil continued.Since Black women are a high risk group, she emphasized the need for a unique personalized plan to treat breast cancer. There should be no diagnostic delays.

Sheila McGlown, a 25 year Air Force veteran and 10 year MBC patient advocate, chimed in and asked allies to see her as human. “Treat me as I’m living not as I’m dying.” Sheila desires medical professionals to be passionate about her health with the same passion as when caring for a white woman. This starts with appropriate medical school training. She charged medical schools to invite Black women into the classroom to share patient experiences. It has been over five years with a consistently high mortality rate for Black women with breast cancer. Sheila encouraged the audience to work as a collective to reduce this number because something is wrong.

Jersi Baker, Founder of Angel in Disguise, was diagnosed with MBC in 2011. She was referred to palliative care and a social worker nine years later. Jersi questioned why her pain did not matter and left the audience with this statement, “Stop pimping us and start partnering with us.”

Shonte Drakeford, a healthcare provider and patient, shared that her goals have always been to help people in underprivileged communities. Due to her military background, Shonte experienced first hand the stark difference in healthcare treatment based on location. This should not be the case. She implored healthcare professionals to check their colleagues. “Don’t be complacent,” Sheila said “Help change the percentages of deaths within the Black community.”

Roberta Albany, a Susan G. Komen advocate, in Science and Membership Committee Member, concluded the conversation by stating healthcare providers need to build a relationship with Black and Brown populations to change the narrative. Every patient’s issue is important.

Conversation Takeaways:

  • Patient advocate participation must be a prerequisite for cancer centers and other healthcare institutions to receive funding for clinical trials.
  • Patient advocates should be required participants when developing clinical trials.
  • Diverse patient-centered experience training should be offered in medical schools.
  • Ensure organizations validate their investments.
  • Reduce HCP bias in the media.

Resource Guide

[1] “Bias.” Dictionary, Merriam-Webster, Accessed 24 Jan. 2021.