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

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 LopesReginald D. Tucker-Seeley

Social and Family Dynamics, T. Denny Sanford School of (SSFD)

Research output: Contribution to journal › Article › peer-review

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.

Original language	English (US)
Pages (from-to)	547-561
Number of pages	15
Journal	Future Oncology
Volume	20
Issue number	9
DOIs	https://doi.org/10.2217/fon-2023-0771
State	Published - Mar 1 2024

Keywords

AYA
BIPOC
patient engagement
real-world evidence
survivorship
young adult

ASJC Scopus subject areas

Oncology
Cancer Research

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10.2217/fon-2023-0771

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Cheung, C. K., Miller, K. A., Goings, T. C., Thomas, B. N., Lee, H., Brandon, R. E., Katerere-Virima, T., Helbling, L. E., Causadias, J. M., Roth, M. E., Berthaud, F. M., Jones, L. P., Ross, V. A., Betz, G. D., Simmons, C. D., Carter, J., Davies, S. J., Gilman, M. L., Lewis, M. A., ... Tucker-Seeley, R. D. (2024). BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research: an electronic Delphi study. Future Oncology, 20(9), 547-561. https://doi.org/10.2217/fon-2023-0771

Cheung, CK, Miller, KA, Goings, TC, Thomas, BN, Lee, H, Brandon, RE, Katerere-Virima, T, Helbling, LE, Causadias, JM, Roth, ME, Berthaud, FM, Jones, LP, Ross, VA, Betz, GD, Simmons, CD, Carter, J, Davies, SJ, Gilman, ML, Lewis, MA, Lopes, G & Tucker-Seeley, RD 2024, 'BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research: an electronic Delphi study', Future Oncology, vol. 20, no. 9, pp. 547-561. https://doi.org/10.2217/fon-2023-0771

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

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.",

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author = "Cheung, {Christabel K.} and Miller, {Kimberly A.} and Goings, {Trenette Clark} and Thomas, {Bria N.} and Haelim Lee and Brandon, {Rachel E.} and Thuli Katerere-Virima and Helbling, {Laura E.} and Causadias, {Jos{\'e} M.} and Roth, {Michael E.} and Berthaud, {Frantz M.} and Jones, {Laundette P.} and Ross, {Valentina A.} and Betz, {Gail D.} and Simmons, {Cole D.} and Jay Carter and Davies, {Simon J.} and Gilman, {Megan L.} and Lewis, {Mark A.} and Gilberto Lopes and Tucker-Seeley, {Reginald D.}",

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doi = "10.2217/fon-2023-0771",

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T1 - BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research

T2 - an electronic Delphi study

AU - Cheung, Christabel K.

AU - Miller, Kimberly A.

AU - Goings, Trenette Clark

AU - Thomas, Bria N.

AU - Lee, Haelim

AU - Brandon, Rachel E.

AU - Katerere-Virima, Thuli

AU - Helbling, Laura E.

AU - Causadias, José M.

AU - Roth, Michael E.

AU - Berthaud, Frantz M.

AU - Jones, Laundette P.

AU - Ross, Valentina A.

AU - Betz, Gail D.

AU - Simmons, Cole D.

AU - Carter, Jay

AU - Davies, Simon J.

AU - Gilman, Megan L.

AU - Lewis, Mark A.

AU - Lopes, Gilberto

AU - Tucker-Seeley, Reginald D.

PY - 2024/3/1

Y1 - 2024/3/1

N2 - 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.

AB - 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.

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

Abstract

Keywords

ASJC Scopus subject areas

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