BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research: an electronic Delphi study

Christabel K Cheung; Kimberly A Miller; Trenette Clark Goings; Bria N Thomas; Haelim Lee; Rachel E Brandon; Thuli Katerere-Virima; Laura E Helbling; José M Causadias; Michael E Roth; Frantz M Berthaud; Laundette P Jones; Valentina A Ross; Gail D Betz; Cole D Simmons; Jay Carter; Simon J Davies; Megan L Gilman; Mark A Lewis; Gilberto Lopes; Reginald D Tucker-Seeley

doi:10.2217/fon-2023-0771

BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research: an electronic Delphi study

Future Oncol. 2024 Mar;20(9):547-561. doi: 10.2217/fon-2023-0771. Epub 2024 Jan 10.

Authors

Christabel K Cheung¹, Kimberly A Miller², Trenette Clark Goings³, Bria N Thomas⁴, Haelim Lee¹, Rachel E Brandon⁵, Thuli Katerere-Virima¹, Laura E Helbling¹, José M Causadias⁶, Michael E Roth⁷, Frantz M Berthaud⁸, Laundette P Jones⁹, Valentina A Ross¹, Gail D Betz¹⁰, Cole D Simmons¹¹, Jay Carter¹, Simon J Davies¹², Megan L Gilman¹³, Mark A Lewis¹⁴, Gilberto Lopes¹⁵, Reginald D Tucker-Seeley¹⁶

Affiliations

¹ University of Maryland School of Social Work, Baltimore, MD 21201, USA.
² Department of Preventive Medicine and Dermatology, Keck School of Medicine, University of Southern California, Los Angeles, CA 90033, USA.
³ School of Social Work, University of North Carolina, Chapel Hill, NC 27516, USA.
⁴ Temple University School of Podiatric Medicine, Philadelphia, PA 19107, USA.
⁵ University of Michigan School of Social Work, Ann Arbor, MI 48109, USA.
⁶ T. Denny Sanford School of Social and Family Dynamics, Arizona State University, Tempe, AZ 85287, USA.
⁷ Department of Pediatrics, University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA.
⁸ The Hospitals of Providence, El Paso, TX 79938, USA.
⁹ University of Maryland School of Medicine, Baltimore, MD 21201, USA.
¹⁰ University of Maryland Baltimore Health Sciences & Human Services Library, Baltimore, MD 21201, USA.
¹¹ Bryn Mawr Graduate School of Social Work and Social Research, Bryn Mawr, PA 19010, USA.
¹² Teen Cancer America, Los Angeles, CA 90064, USA.
¹³ AYA Psychiatry, Memorial Sloan Kettering Cancer Center, New York, NY 10065, USA.
¹⁴ Department of Gastrointestinal Oncology, Intermountain Healthcare, Salt Lake City, UT, 84107 USA.
¹⁵ Sylvester Comprehensive Cancer Center, Miller School of Medicine, University of Miami, Miami, FL 33136, USA.
¹⁶ Health Equity Strategies and Solutions, Los Angeles, CA 90008, USA.

Abstract

Aims: To characterize Black, Indigenous and People of Color (BIPOC) adolescent and young adult (AYA) cancer patients' experiences of patient engagement in AYA oncology and derive best practices that are co-developed by BIPOC AYAs and oncology professionals. Materials & methods: Following a previous call to action from AYA oncology professionals, a panel of experts composed exclusively of BIPOC AYA cancer patients (n = 32) participated in an electronic Delphi study. Results: Emergent themes described BIPOC AYA cancer patients' direct experiences and consensus opinion on recommendations to advance antiracist patient engagement from BIPOC AYA cancer patients and oncology professionals. Conclusion: The findings reveal high-priority practices across all phases of research and are instructional for advancing health equity.

Keywords: AYA; BIPOC; patient engagement; real-world evidence; survivorship; young adult.

MeSH terms

Adolescent
Delphi Technique
Humans
Medical Oncology
Neoplasms* / therapy
Patient Participation*
Young Adult

Grants and funding

P30 CA008748/CA/NCI NIH HHS/United States