Among the topics discussed at the 4th Global Adolescent and Young Adult Cancer Congress held online in December 2021 was the urgent need for clinicians, researchers, and advocates in adolescent and young adult (AYA) oncology to join forces to eradicate racist approaches to patient engagement in research and advocacy. The session, “A Call to Action: Antiracist Patient Engagement in Adolescent and Young Adult Oncology,” was presented by Christabel K. Cheung, PhD, MSW, based on research by Dr. Cheung and her colleagues that reviewed current patient engagement practices in AYA oncology research and advocacy.
Dr. Cheung used the PCORI (Patient-Centered Outcomes Research Institute) Framework for Patient Engagement as an organizing structure to present recommendations in her paper to advance greater inclusivity of racially and ethnically minoritized AYA patients with cancer in clinical trials. The framework includes the principles of transparency, honesty, and trust, coupled with the following four domains of research:
The past decade of AYA oncology research has brought attention to the lack of improvement in survival rates in this patient population compared with survival gains for pediatric and older patients diagnosed with cancer—5-year survival rates for all cancer types among AYAs have seen only modest increases over the past 5 decades. Dr. Cheung challenges researchers to make progress in engaging Black, Indigenous, and people of color AYAs in clinical studies to close the gaps in knowledge about racial and ethnic minority AYA patients and reduce disparities in their cancer outcomes.1
“We all have some measure of implicit bias or unconscious prejudice that we bring to our work and must make extra efforts to address.”— Christabel K. Cheung, PhD, MSW
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“Although AYAs account for approximately 5% of cancer cases in the United States, they represent about 1 in 10 cases among Hispanics and Asians/Pacific Islanders,” said Dr. Cheung. “Incidence rates are highest in non-Hispanic White individuals, followed by non-Hispanic Black individuals, and are lowest in Asian/Pacific Islander individuals.”2
The ASCO Post talked with Dr. Cheung, Assistant Professor at the University of Maryland School of Social Work and a member of the University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center, Baltimore, about the effect of systemic racism in health care, how to improve clinical outcomes for racial minority AYAs with cancer, and achieving genuine—rather than token—patient engagement in AYA research efforts.
Creating Equitable Care for All Patients With Cancer
Based on your research, how prevalent is racism in AYA clinical care and research? How is it manifested in this patient population?
The impact of systemic racism in medicine does not appear to manifest differently by age and starts from the design of the clinical trial. Implicit bias and systemic racism are woven into the fabric of the society we live in. Consequently, we all have some measure of implicit bias or unconscious prejudice that we bring to our work and must make extra efforts to address.
I always draw on the work of antiracism scholar and historian, Ibram X. Kendi, PhD, who defines racism as a policy or idea that creates and perpetuates inequality among people of different races and antiracism as a policy or idea that creates an equitable society for all races. Dr. Kendi teaches how the historical legacy of racism, the heartbeat of racism, in America has been denial. And the sound of that heartbeat is in the defensive response “I’m not a racist.”
Racism is commonly perceived as a personal attack on someone’s character that either forestalls discussion or misdirects our collective dialogue. What we are trying to do with our research is move away from this myopic and singular focus on individual bias.
As a brown-skinned Chinese American, I am somewhere in the middle of the color spectrum. And even if I do not hold internalized racism, I must have done something racist at some point in my life because I operate in systems that are racist at the interpersonal, institutional, and structural levels. Structural racism in our health-care system is not simply the result of privately held prejudices.3
Dr. Kendi explains in his book How to Be an Antiracist that there is no such thing as a policy being not racist. Polices are either antiracist, which creates an equitable society, or racist, which contributes to inequities.4
Antiracist policies call upon AYA oncology to depersonalize reactions to racism, acknowledge mistakes, and take corrective actions in a timely manner. We can dismantle and reorganize long-established systems in the development and testing of clinical trials, so racism does not continue to persist within these systems. And this work must be led by embodied Black, Indigenous, and people of color leaders rather than executed independently by nonminoritized leaders, which may actually exacerbate structural racism.
Developing Recommendations for Antiracist Patient Engagement in Research
What must happen to structurally change clinical care and research for AYAs to improve cancer outcomes?
In our paper, we used the previously mentioned four domains of research organized by the PCORI Framework for Patient Engagement—topic selection and research prioritization, proposal review, dissemination and implementation of results, and evaluation—to determine recommendations for antiracist patient engagement in research.
In all areas of science, it is important for researchers first to identify any disparities that exist in their area of study. One of the first questions when selecting a research topic relevant to racially and ethnically minoritized AYA patients with cancer should be whether the research can have a positive impact on reducing health-related inequities.
Brandon Hayes-Lattin, MD, FACP
Dr. Hayes-Lattin is Professor of Medicine and Medical Director of the Adolescent and Young Adult Oncology Program at the Knight Cancer Institute at Oregon Health and Science University in Portland, Oregon.
On a higher level, it is not just about including more minoritized populations in clinical trials but ensuring that research leaders are racially and ethnically diverse as well. We often see leaders who are not from minoritized populations with a set agenda for an initiative. For example, in clinical trial recruitment, the leader of that trial may say that to diversify the study, the trial will need to engage with Black leaders in the Black community. However, unless appropriate Black leaders are involved in the design of the trial, they won’t have genuine buy-in, and the study’s development and goals will not be as impactful as they could have been.
We want members of minoritized populations to have the opportunity to be fully invested in creating structural change. They exclusively hold the embodied wisdom that is necessary to advance antiracist approaches to patient engagement in AYA oncology research and advocacy.5-7
Ending Token Patient Engagement in AYA Research
In your paper, you talk about token engagement in AYA research. What does that mean, and how do researchers achieve genuine patient engagement to improve cancer research for this patient population?
Token engagement, or tokenism, in research is defined as the practice of making perfunctory or symbolic efforts to include patients simply for the sake of appearances. One example is failing to give patients any decision-making authority while praising their involvement in publications, at conferences, or in advocacy roles, where their feedback does not inform the work.
In contrast, genuine engagement of minoritized patients provides them with real power to affect outcomes. A qualitative study by David L. Hahn, MD, MS [Director, Wisconsin Research and Education Network] and his colleagues on tokenism in patient engagement examined conversations among key stakeholders in health-care research, including patient advocates, community clinicians, and academic researchers, in response to the question, “How do we move beyond tokenism in patient engagement?”
Examples of genuine and token engagement were categorized into three domains: methods/structure of engagement, intent, and relationship building. Participants in the study with experience in patient-engaged research projects said that longitudinal engagement was a key element in implementing real engagement with patients and community partners. Specifically, within the patient engagement domain of relationship building, one example of more genuine engagement to build trust is the presence of mutual benefits. Alternatively, more token engagement occurs when the benefit is not mutual.8
Boosting AYA Participation in Cancer Clinical Trials
An analysis of 25 years of National Cancer Institute–funded clinical trials found that 8.4% of patients enrolled in those trials were AYAs and that 25.0% of those patients identified as belonging to a racial or ethnic minority group.9 How can oncologists and researchers boost participation by minority AYA patients in cancer clinical trials?
Oncologists need first to learn and use language that resonates with today’s cohort of minoritized AYAs. Second, they need to educate young patients about appropriate clinical trials and how they might benefit from enrolling in a cancer clinical trial. Patients need buy-in from their oncologists that is built upon transparency, honesty, and trust. Patients place so much weight on what their oncologists tell them that it can make the difference between their participating in a clinical trial or never hearing about one and missing a potentially beneficial treatment opportunity to improve their chances of survival and/or quality of survival.
As an AYA of color and a two-time cancer survivor of Hodgkin lymphoma, I know firsthand the importance of having an oncologist educate patients about research opportunities. My oncologist was the director of a lymphoma program at my hospital, but I don’t think he would have mentioned a clinical trial to me if I hadn’t brought it up first even though he was the principal investigator on the study.
Presenting a clinical trial to an AYA patient as an option of care rather than as a directive is a more effective way to encourage AYAs to join a clinical trial and, ultimately, advance survival progress in this patient population.
DISCLOSURE: Dr. Cheung reported no conflicts of interest.
1. Cheung CK, Tucker-Seeley R, Davies S, et al: A call to action: Antiracist patient engagement in adolescent and young adult oncology research and advocacy. Future Oncol 17:3743-3756, 2021.
2. American Cancer Society: Cancer Facts & Figures 2020: Special Section: Cancer in Adolescents and Young Adults. Available at www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/special-section-cancer-in-adolescents-and-young-adults-2020.pdf. Accessed October 19, 2022.
3. Bailey ZD, Feldman JM, Bassett MT: How structural racism works—Racist policies as a root cause of U.S. racial health inequities. N Engl J Med 384:768-773, 2021.
4. Kendi IX: How to Be an Antiracist, pp 13–34. New York, NY: One World; 2019.
5. Cheung CK: Young cancer patients as future leaders in the global knowledge economy. Cancer Therapy Oncol Int J 10: 555795, 2018.
6. Cheung CK, Simmons CD: Centering black swans: Embodied research in adolescent and young adult oncology. Oppositional Conversations. April 21, 2021. Available at http://www.oppositionalconversations.org/issue-v-contestations/2021/5/5/centering-black-swans-embodied-research-in-adolescent-and-young-adult-oncology. Accessed October 19, 2022.
7. Cheung CK, Norlander MG, Vest AN, et al: A thin line between helpful and harmful Internet usage: Embodied research on Internet experiences among adolescent and young adult cancer patients. J Adolesc Young Adult Oncol 11:478-485, 2022.
8. Hahn DL, Hoffmann AE, Felzien M, et al: Tokenism in patient engagement. Fam Pract 34:290-295, 2017.
9. Unger JM, Beauchemin M, Hershman DL: Adolescent and young adult enrollment to a National Cancer Institute–sponsored National Clinical Trials Network Research Group over 25 years. Cancer 127:4574-4584, 2021.