Better cancer trial representation begins with speaking one’s language

(Press-News.org) NEW YORK, NY (July 29, 2024) ---- Underrepresentation of racial and ethnic minority populations in cancer clinical trials persists partly because translation and interpretation services and resources are unavailable or inadequate in the United States, according to a Children’s Oncology Group (COG) study led by Columbia University School of Nursing. The updated study was published online in the Journal of the National Cancer Institute Cancer Spectrum on July 25, 2024 and will appear in the August 2024 journal issue. 

In 2019, 68 million people in the United States were reported to speak a language other than English at home. In May 2023, the National Institutes of Health passed the Clinical Trial Diversity Act to enhance the inclusion of women, racially/ethnically diverse individuals, and people of all ages in NIH-funded research, building on 1994 legislation. Despite recent trends and policies, disparities remain. 

“Appropriate representation of minoritized and underrepresented populations in clinical research, including persons who do not speak English, is necessary to ensure equitable access to novel treatments and generalizable research findings,” Columbia Nursing Assistant Professor Melissa Beauchemin, PhD, the study’s lead author, and her colleagues state in their report. 

To understand the extent of translation and interpretation challenges that organizations face, Beauchemin and her colleagues within the Language Equity Working Group of COG’s Diversity and Health Disparities Committee surveyed 230 COG-affiliated institutions. They found: 

Full consent form translation was required at only 50% of institutions. 

Twelve percent of institutional review boards restricted the use of centrally translated consent forms.  

Forty-six percent of institutions reported insufficient funding to support translation costs; only 15% had access to free translation services.  

Forty-four percent were required to use in-person interpreters for consent discussions; lack of available in-person interpreters was the most-cited barrier to obtaining consent. 

“These findings show that there are multiple language-specific barriers that make it difficult to recruit people who do not speak English. Eliminating these may be the key to making clinical trials more accessible and universally applicable, while potentially impacting and improving outcomes,” says Beauchemin. 

Other study authors include Maria Ortega, MPH, University of Connecticut; Sheila Santacroce, PhD, School of Nursing and Linberger Comprehensive Cancer Center at University of North Carolina at Chapel Hill; Joanna Robles, MD, Wake Forest University Health Sciences; Jenny Ruiz, MD, Children's Hospital of Philadelphia; Anurekha Hall, MD, University of Washington School of Medicine and Seattle Children’s Hospital; Justine Kahn, MD, Manuela Orjuela, MD, and Grace Hillyer, EdD, all from Columbia University Irving Medical Center; Cecilia Fu, MD, Keck School of Medicine, Children’s Hospital of Los Angeles; Samrawit Solomon, BA, Columbia University School of Nursing; Wendy Pelletier, MS, Alberta Children's Hospital; Raul Montiel-Esparza, MD, Prisma Health; Lindsay Blazin, MD, Riley Children's Hospital; Cassie Kline, MD, and Alix E. Seif, MD, all from the Children's Hospital of Philadelphia; Paula Aristizabal, MD, University of California at San Diego; Lena Winestone, MD, University of California San Francisco, Benioff Children’s Hospitals and Helen Diller Family Comprehensive Cancer Center; and Maria Velez, MD, Children's Hospital of New Orleans. Velez is a senior author.  

The study was funded by the COG NCORP Research Base Grant. COG, a member of the NCI National Clinical Trials Network (NCTN), is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. COG unites over 10,000 experts in childhood cancer at more than 200 leading children’s hospitals, universities, and cancer centers across North America, Australia, and New Zealand in the fight against childhood cancer. Today, more than 90% of the 16,000 children and adolescents diagnosed with cancer each year in the United States are cared for at COG member institutions. Research performed by COG institutions over the past 50 years has transformed childhood cancer from a virtually incurable disease to one with a combined 5-year survival rate of 80%. COG’s mission is to improve the cure rate and outcomes for all children with cancer. 

About Columbia University School of Nursing  

Columbia University School of Nursing is advancing nursing education, research, and practice to advance health for all. As one of the top nursing schools in the country, we offer direct-entry master’s degrees, advanced nursing, and doctoral programs with the goal of shaping and setting standards for nursing everywhere. And, as a top recipient of NIH research funding, we address health disparities for under-resourced populations and advance equitable health policy and delivery.  

Through our expansive network of clinical collaborations in New York City and around the world —including our dedicated faculty practice, the ColumbiaDoctors Nurse Practitioner Group — we cultivate a culture of innovation and diversity and champion a community-centered approach to care. Across the Columbia Nursing community, we encourage active listening, big thinking, and bold action, so that, together, we’re moving health forward.  

Columbia University School of Nursing is part of Columbia University Irving Medical Center, which also includes the Columbia University Vagelos College of Physicians and Surgeons, the Mailman School of Public Health, and the College of Dental Medicine. 

END