By Kara Downey, MSW, and Karen Costello, MSS, LSW, OSW-C
As social work professionals, we know firsthand how disparities in cancer diagnosis and treatment can affect health outcomes across communities. This disparity is particularly evident in the rate of cancer clinical trial participation among underserved populations. Currently, less than 5% of clinical trial participants identify as Black or African American, despite making up 13% of the total U.S. population (Unger, et. al., 2016). Research shows that systematic racism, provider bias, eligibility criteria, justified medical mistrust, and lack of patient knowledge, among others, are all factors that lead to this outcome (Hamel, et. al., 2016). Research also tells us that not only are Black patients less likely to join a clinical trial, but they are also less likely to be offered one (Awidi & Al Hadidi, 2021) – meaning a growing proportion of Americans are not fully benefiting from advances in cancer care.
The Cancer Support Community’s Peer Clinical Trials Support Program is a new initiative aimed at improving health outcomes in the Black community – by increasing clinical trial awareness and knowledge. Designed and implemented by social workers, the Peer Program offers Black cancer patients, survivors, and previvors one-on-one practical and emotional support from trusted messengers who identify as Black and have personal experience participating in a cancer clinical trial.
To develop this program, we looked to our profession as a guide – applying social work and oncology social work values, principles, and practices – including social justice, dignity and worth of the person, self-determination, and commitment to community – to address the disparate lack of cancer clinical trial representation in Black communities. Recognizing the important social work tenet of doing with and not for, the Peer program is culturally adaptive and responsive, created in collaboration with Black cancer patients, survivors, and healthcare providers.
CSC's program team of social workers developed a comprehensive training program to educate Peer Specialists– cancer patients and survivors and previous clinical trial participants. Peer Specialists have gone on to educate and support people who are seeking general understanding of and treatment options in clinical trials. The program recipients are given education and support resources so that they can better explore and obtain cancer treatments with more confidence and equity. This knowledge from their peers has meant participants are able to self-advocate and express their wishes for clinical trial information from their providers.
It's important we recognize support around clinical trials may be just one need of many, and that we strive to address all the psychosocial needs of our participants. Many are experiencing stress and anxiety, need financial support, or would benefit from emotional help offered by a mental health professional. As part of the Peer Program, we offer the full spectrum of CSC services, including our Cancer Support Helpline, staffed with licensed professionals and subject matter experts, and direct connection to their local CSC or Gilda’s Clubs for local, community-focused support.
Currently, we have a cohort of eight Peer Specialists, representing diverse diagnosis and trial experience. Since the program began in July 2022, our Peer Specialists have supported over 120 individuals looking to learn about and explore clinical trials as a treatment option. Our preliminary results show increased knowledge and patient-provider communication about clinical trials as well as an increase in the likelihood of a participant enrolling in a clinical trial. To date, we have one clinical trial enrollee.
The development of strong, vibrant, and healthy communities has long been a component of the social work profession. As social workers we play an important role in helping individuals overcome the barriers to necessary change and in advocating for the end of unjust and racist practices. By promoting equity and access – through program design and evaluation – we can help ensure individuals have the ability to make informed decisions about their healthcare and build programs and systems that dismantle oppression. The Peer Clinical Trials Support Program and its commitment to conducting research to advance clinical knowledge and advocating with a community to address its needs is a clear example of social work values and goals in action.
An author, Kara Downey, will be hosting a poster session on the Peer Program and Peer Specialist training program at the upcoming AOSW Conference this June.
For more about the Peer Program, click here.
References
Awidi, M., & Al Hadidi, S. (2021). Participation of black americans in cancer clinical trials: Current challenges and proposed solutions. JCO Oncology Practice, 17(5), 265–271. https://doi.org/10.1200/op.21.00001
Hamel, L. M., Penner, L. A., Albrecht, T. L., Heath, E., Gwede, C. K., & Eggly, S. (2016). Barriers to Clinical Trial Enrollment in Racial and Ethnic Minority Patients With Cancer. Cancer control : journal of the Moffitt Cancer Center, 23(4), 327–337. https://doi.org/10.1177/107327481602300404
Unger, J. M., Cook, E., Tai, E., & Bleyer, A. (2016). The role of clinical trial participation in cancer research: barriers, evidence, and strategies. American Society of Clinical Oncology Educational Book, 36, 185-198
