BLOG: Trials, tribulations of recruiting Black patients for cancer research
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In the summer of 2021, I worked as a medical student researcher at Memorial Sloan Kettering Cancer Center. Over the course of 8 weeks, I became embarrassingly familiar with the disparities of Black enrollment in cancer research.
My plan was to investigate barriers to cancer care during the COVID-19 pandemic among Black women in a COVID-19 hotspot. Given known baseline differences in access, quality and outcomes, my research mentor and I wanted to assess barriers we presumed had been worsened by increased unemployment and delays in screenings and treatment among other consequences of the global pandemic.
Radio silence
To ensure robust enrollment in our survey-based study, I spent weeks reaching out to breast cancer forums on multiple websites, working to gain access to email listservs, joining Facebook groups that required administrator approval and contacting Black churches in Manhattan with pleas to add the survey link to their newsletter.
Understanding the potential hesitancy folks may have with sharing personal medical concerns, our recruitment materials highlighted survey anonymity and that it was led by a Black woman — me. I included a headshot of myself, as well as an explanation that understanding barriers could allow us to design programs to improve cancer care.
Despite exhaustive efforts to obtain survey responses, I was met with radio silence — only one-and-a-half responses.
As a Black woman who has experience collecting personal stories — I wrote a book detailing the stories of women with breast cancer in 2019 — I was bemused by the seeming inaccessibility of a group to which I belonged.
Skewed representation
The problem that I encountered last summer is tied to a larger problem in public health. According to FDA, Black patients with cancer are underrepresented in clinical research and clinical trials. Skewed representation not only biases evidence-based medicine, which guides clinical decision-making for optimal cancer treatments, but also limits the individual benefits of access to innovative treatments not yet available to the public.
Several factors may drive poor participation of Black patients. Lack of trust, low health literacy, low socioeconomic status and decision-making based in spirituality and/or familial opinion are all potential reasons for reduced participation by some.
Physician-related barriers and those caused by structural racism — such as implicit bias, overburdened staff and underresourced centers — likely also play a role.
Although many studies have explored the reasons for lack of participation, there have been few adequate solutions. Suggested solutions include the integration of educational videos, as well as community-based participatory research strategies, to dispel misconceptions surrounding clinical trials and educate broadly.
However, these solutions target lack of trust and some knowledge barriers but may poorly account for factors such as limited trial availability in treatment facilities or physician bias.
To address financial concerns, which factor more broadly into social determinants of health, honorariums for time spent traveling and participating in clinical research may increase participation. Increased diversity of the physician workforce may both reduce bias within health care and increase trust. Research has shown that Black patients value receiving trial information from someone with the same racial/ethnic identity.
Grassroots community
Although different from clinical trials and qualitative research studies, the podcast I started in 2019 was successful in recruiting Black women with breast cancer simply through word of mouth.
Through a mutual friend, I was put in contact with the founder of the Thelma D. Jones Breast Cancer Fund. Shortly thereafter, multiple women reached out to participate, presumably feeling more comfortable by an introduction from within a preestablished, supportive grassroots community.
Similar to designated leaders in community-based participatory research, friends and family who informally speak of research studies may ultimately increase trust and clinical research participation. Having current or former Black research volunteers or investigators do outreach may encourage community word of mouth in safe spaces.
Potential venues include Delta Sigma Theta meetups — like those attended by my own parents — recreational/community centers, Black churches, historically Black colleges and universities alumni gatherings and Black health advocacy groups.
Additional information and talks can be arranged at annual breast cancer walks, including Race for the Cure and Strides Against Breast Cancer, which are diversely attended and include an activated and enthusiastic audience.
This type of boots-on-the-ground outreach can lay the groundwork for explaining why clinical research matters for Black communities. Myths can be debunked, advantages discussed and even those potential future participants who are largely swayed by their family’s opinions may be accurately informed by parents or children. Fueling participation in clinical trials through word of mouth may be another way to tackle current barriers — engaging communities from within is a key aspect of trust building.
Reflections
By the end of my internship, I ended up switching gears to an entirely new research project evaluating disparities in care for Black women.
However, reflecting on research project number one and our failed recruitment strategies, I have become more invigorated than ever to bring the full benefits of scientific advancement into my community and to highlight why clinical research should serve them.
The experience made me realize that this work cannot be accomplished in a research summer; it requires motivated and dedicated physicians, researchers and community members laying the groundwork for years, investing in communities, forming bonds and building trust.
As I move forward into my future career as a physician, I hope to do the essential work of bridging this gap. Perhaps, in the near future, we can move toward meeting Black women where they are in their communities to approach them for clinical research, instead of expecting them to come to us.
References:
- Swaby J, et al. Ecancermedicalscience. 2021;doi:10.3332/ecancer.2021.1307.
- Walker S. Abstract 1014. Presented at: ASCO Annual Meeting; June 3-7, 2022; Chicago.
- Marion S, Chino F. Cancer Epidemiol Biomarkers Prev. 2022;doi:10.1158/1538-7755.DISP21-PO-124.
- Marion S. When We Had Cancer. Spotify. 2019. Available at: https://open.spotify.com/show/5lNFNpnBBGpW5eDfZ5j1L6. Accessed Oct. 4, 2022.
- The Thelma D. Jones Breast Cancer Fund. Available at https://tdjbreastcancerfund.org/.
- Marion S, et al. The COVID-19 Pandemic Has Intensified Health Equity Disparities Among Black Women With Breast Cancer. We Must Act Now. ASCO Daily News. Available at: The COVID-19 Pandemic Has Intensified Health Equity Disparities Among Black Women With Breast Cancer. We Must Act Now (ascopubs.org). Published Aug. 25, 2022. Accessed Oct. 31, 2022.
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Sarah Marion is a third-year medical student at the University of Virginia Medical School. She can be reached at swm5tx@virginia.edu or on Twitter @sarahwmarion. She wrote this blog post under the guidance of her mentor, Fumiko Chino, MD, radiation oncologist at Memorial Sloan Kettering Cancer Center.
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