By Raymond Mailhot Vega, MD, MPH
In mid-December, a colleague emailed me a link to an ROhub discussion on the creation of a society for Hispanics in radiation oncology. This prospect excited me. Representation matters. As a Latino becoming a radiation oncologist, I did not see myself in the workforce. Becoming what I did not see presented unique challenges and, at times, a feeling of isolation since I struggled to find others who had shared my experiences. A silver lining is charting your own territory, but being on your own, it can be hard to know if you’re making progress heading towards your destination. How do you explain to an attending whose feedback post-consult is, “Wow, you speak Spanish so well” that while meant as a compliment, so do 15% of Americans and such an observation does not provide a meaningful critique of my patient knowledge or my memorization of the inclusion criteria of PORTEC-2. Now as an attending and full member of ASTRO, I am eager to extend a hand to the next generation as they navigate their careers.
Recently, ASTRO has been working to create different ROhub communities to provide virtual spaces for communities of radiation oncologists to gather, addressing an important need. A space for communities of radiation oncologists to gather is manifold in its benefits. Latinx physicians are drastically underrepresented in radiation oncology at only 2% of the rad-onc workforce overall,1 despite the fact that 15% of Americans identify as Hispanic. Established in education is the credo “you can’t be what you can’t see,” and medical training and employment is no different. A virtual affinity space allows for mentorship of trainees and junior faculty seeking career advice. A dedicated space also provides mental health support. Physician burnout continues to gain more visibility, and the extra stress and invisible labor that more commonly burden diverse faculty are well-documented.2 A defined space for Latinx doctors facilitates the creation of a community in which we can share our common experiences, interests, stories and struggles.
Some may feel that purposely creating communities around race or ethnicity could increase divisions between people. Divisions already exist, and the “I don’t see race” perspective from the 1990s blinds ourselves and hinders our ability to dismantle the extraordinary barriers developed over hundreds of years of systemic racism that affects both patients and doctors. A dedicated community can provide a safe space to generate ideas from lived experience and foster leaders to represent that community among the larger membership. The COVID-19 pandemic has thrust in the spotlight the disparities that communities of color have faced, and a forum representing those affected can create opportunities that successfully address such inequities in health care and oncology.
To address the need for connection among physicians, physicists and trainees, ASTRO is launching various ROhub communities. These forums will create a virtual space in which ASTRO’s underrepresented and diverse members can congregate and network along with all members who wish to participate. I am excited for ASTRO’s debut and kick-off of these ROhub communities — intentional spaces for radiation oncologists to unite and grow from shared experiences. Particularly as we face social changes with our Annual Meeting moving to a virtual experience, planned socializing and networking must adapt. The timing for this initiative could not be more appropriate. Opportunity is not a zero-sum game: we don’t have to lose power or influence when others gain it. Increased diversity will push our research forward, bring new ideas to the forefront and result in higher-quality care for all patients.
ASTRO’s initiative will provide a broader tent for all of us. I encourage you to speak out for increased equity in representation of your brown and Black radiation oncology colleagues, for bridging the health-care disparities that patients of color face, for making our system more accessible for the disabled, for improving gender parity among our workforce and for creating a safe space for those who identify as LGBT+. Our time is now.
Since the submission of this blog post, ASTRO is pleased to announce the launch of the Gender Equity Community on the ROhub, a space for members to discuss gender gaps, offer mentorship and seek or provide helpful resources. The community was created for those personally encountering gender-related concerns and for those who wish to support and promote gender equity within their workplace. Work is underway to launch additional communities in the coming months.
Raymond Mailhot Vega, MD, MPH, is a gay, Latino assistant professor at the University of Florida, where he directs the hematology radiotherapy program in addition to treating pediatric patients and patients with breast cancer. He is a recipient of a Global Oncology-Young Investigator Award to conduct educational interventions for pediatric radiotherapy treatment in Mexico to reduce disparate outcomes.
1. Fung CY, Chen E, Vapiwala N, et al. The American Society for Radiation Oncology 2017 Radiation Oncologist Workforce Study. Int J Radiat Oncol Biol Phys. 2019; 103: 547-56.
2. Matthew PA. What is Faculty Diversity Worth to a University? The Atlantic. 2016 November 23, 2016;Sect. https://www.theatlantic.com/education/archive/2016/11/what-is-faculty-diversity-worth-to-a-university/508334/. Accessed on May 11, 2020.
By Fumiko Chino, MD
ASTRO's Committee on Health Equity, Diversity and Inclusion (CHEDI) has made recruitment and inclusion of underrepresented minorities into cancer clinical trials a top priority for the upcoming year.
Clinical trials are the mainstay in the development and validation of new cancer therapies and treatment options. Despite the potential for access to novel new treatments and technologies, less than one in 20 adult patients with cancer participate in a clinical trial.1 This disparity is even starker for racial and ethnic minorities1 with data showing that the clinical trial enrollment of racial/ethnic minorities has actually decreased over the past 14 years.2 In 2012, only 17% of patients enrolled in industry-sponsored clinical trials were of a racial or ethnic minority, despite these groups making up about one-third of the population.3 One evaluation found that black participation reached 10% for only two of the 31 cancer drugs studied.4 Clinical trial participants are disproportionately non-Hispanic white men with higher education levels and household incomes.1,5
With skewed enrollment and participation, conclusions of clinical trials may be questioned for how generalizable they may be to patients not fully represented in the trial cohort.6 As racial/ethnic minorities carry some of the highest cancer burdens in the United States, equitable participation in clinical trials becomes an important tool in the fight against health care disparities. Adequate representation in cancer research is essential in the development of therapies that are both effective and tolerable to patients from diverse backgrounds. Recurring themes in the assessment of barriers to clinical trial enrollment for racial/ethnic minorities include trust, costs and access/knowledge:
- Trust in medical providers and the health care establishment is a known obstacle for minority engagement. From infamous historical outrages like the Tuskegee Syphilis Study and forced sterilization in segregated hospitals, distrust has been a valid protective measure for many patients for centuries. One study looking at barriers to cancer research found that almost one-third of the black women surveyed agreed that scientists “cannot be trusted” (compared to 4% of white women).7 Trust concerns can be exacerbated by the lack of minority investigators,8 making workforce diversity9,10 an essential target action to improve trust.
- Costs remain a consistent barrier to clinical trial participation, particularly among racial/ethnic minorities.12 Lower income patients are much less likely to participate across all subgroups5 and increased out-of-pocket costs were consistently stated as a concern limiting enrollment.13 Although the costs of study drugs, tests and procedures are typically covered under protocol, there are many “hidden costs” including gas, hotels and missed work.14 Extra costs are in part due to more frequent clinic visits and travel as most comprehensive cancer centers leading clinical trials are in major metropolitan centers. Although there are fears that financial incentives may create a type of economic pressure for patients with lower socioeconomic status to participate, the additive costs of participation are often exclusionary for those with fewer resources.
- Access/knowledge continues to limit many patients who may be otherwise willing and eligible for clinical trial participation. Black/African American patients are less likely to be aware of clinical trials17 and provider referral may also be limited. In one study of black women, almost all participants stated their doctor had “never talked to them” about participating in a clinical trial.18
- Workforce: In addition to improving diversity in physician workforce, which is a long-term process, greater community involvement and use of culturally concordant staff (for example, Hispanic staff and Spanish language-based education materials) have led to improved enrollment in certain target populations.11
- Cost: One intervention of graded financial assistance demonstrated the ability to improve clinical trial equity with successful increased enrollment for those patients typically underrepresented in trials.15 Expanding trials into community cancer centers may also decrease travel costs and increase participation.16
- Access/Knowledge: Targeting enrollment toward specific cultural background and literacy levels may improve recruitment of underrepresented populations.12 Patient navigation programs also hold unique promise to help recruit and retain racial and ethnic minority populations in clinical trials. One study found that black/African American enrollment increased from 9% to 16% after initiating an education and tailored support program.19
CHEDI has highlighted ways that equity, diversity and inclusion can be improved within radiation oncology since its creation as a committee. By focusing this year on underrepresented minority clinical trial enrollment, we hope to raise awareness of this crucial issue and ultimately increase access and outcomes for our patients. Share your suggestions for how to encourage minorities to enroll in clinical trials in the comments below.
Fumiko Chino is transitioning from chief resident in Radiation Oncology at Duke Cancer Institute and the Teaching Value in Health Care Learning Network Fellow for the Costs of Care, a global NGO. She will join the faculty at Memorial Sloan Kettering Cancer Center in August 2019.
- Murthy VH, Krumholz HM, Gross CP: Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA. 291:2720-6,2004.
- Duma N, Vera Aguilera J, Paludo J, et al: Representation of Minorities and Women in Oncology Clinical Trials: Review of the Past 14 Years. J Oncol Pract. 14:e1-e10,2018.
- Proportion of Study Volunteers by Race and Ethnicity in Clinical Research Studies, 2012. JNCI: Journal of the National Cancer Institute. 109, 2017.
- Propublica. "Black Patients Miss Out On Promising Cancer Drugs" Published September 19, 2018, accessed June 23, 2019 at https://www.propublica.org/article/black-patients-miss-out-on-promising-cancer-drugs.
- Unger JM, Gralow JR, Albain KS, et al: Patient Income Level and Cancer Clinical Trial Participation: A Prospective Survey Study. JAMA Oncol. 2:137-9, 2016.
- Rothwell PM: External validity of randomised controlled trials: "to whom do the results of this trial apply?". Lancet. 365:82-93, 2005.
- Mouton CP, Harris S, Rovi S, et al: Barriers to black women's participation in cancer clinical trials. J Natl Med Assoc. 89:721-7, 1997.
- McCaskill-Stevens W, Pinto H, Marcus AC, et al: Recruiting minority cancer patients into cancer clinical trials: a pilot project involving the Eastern Cooperative Oncology Group and the National Medical Association. J Clin Oncol. 17:1029-39, 1999.
- Winkfield KM, Flowers CR, Patel JD, et al: American Society of Clinical Oncology Strategic Plan for Increasing Racial and Ethnic Diversity in the Oncology Workforce. J Clin Oncol. 35:2576-2579, 2017.
- Winkfield KM, Gabeau D: Why workforce diversity in oncology matters. Int J Radiat Oncol Biol Phys. 85:900-1, 2013.
- Symonds RP, Lord K, Mitchell AJ, et al: Recruitment of ethnic minorities into cancer clinical trials: experience from the front lines. Br J Cancer. 107:1017-21, 2012.
- Ford JG, Howerton MW, Lai GY, et al: Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer. 112:228-42, 2008.
- Unger JM, Hershman DL, Albain KS, et al: Patient income level and cancer clinical trial participation. J Clin Oncol. 31:536-42, 2013.
- Chino F, Zafar SY: Financial Toxicity and Equitable Access to Clinical Trials. Am Soc Clin Oncol Educ Book. 39:11-18, 2019.
- Nipp RD, Lee H, Powell E, et al: Financial Burden of Cancer Clinical Trial Participation and the Impact of a Cancer Care Equity Program. Oncologist. 21:467-74, 2016.
- Copur MS, Ramaekers R, Gonen M, et al: Impact of the National Cancer Institute Community Cancer Centers Program on Clinical Trial and Related Activities at a Community Cancer Center in Rural Nebraska. J Oncol Pract. 12:67-8, e44-51, 2016.
- Lara PN, Jr., Paterniti DA, Chiechi C, et al: Evaluation of factors affecting awareness of and willingness to participate in cancer clinical trials. J Clin Oncol. 23:9282-9, 2005.
- Trauth JM, Jernigan JC, Siminoff LA, et al: Factors affecting older African American women's decisions to join the PLCO Cancer Screening Trial. J Clin Oncol. 23:8730-8, 2005.
- Fouad MN, Acemgil A, Bae S, et al: Patient Navigation As a Model to Increase Participation of African Americans in Cancer Clinical Trials. J Oncol Pract. 12:556-63, 2016.