Adolescent and young adult (AYA) patient involvement and engagement in European health care and research projects: expanding the scope of patient advocacy
Adolescent and young adult (AYA) patient involvement and engagement in European health care and research projects: expanding the scope of patient advocacy
Patient involvement and engagement (PI&E) in health care and research has gained prominence, shifting towards person-centred approaches and shared decision making. Patients actively participating in health care design and research lead to better quality and efficiency of care. However, implementing meaningful PI&E is challenging and requires adequate resources and evaluation frameworks so that it does not result in tokenism. This is particularly important when considering niche areas like adolescents and young adults (AYAs) with cancer. As AYAs’ unique needs continue to gain recognition, it is becoming increasingly important to incorporate their expertise and diverse perspectives in navigating care. Large-scale European consortia that focus specifically on AYAs offer opportunities to establish successful partnerships with AYAs in the design and creation of the next generation of equitable, diverse, and inclusive cancer care. Concrete actions for meaningful AYA PI&E are discussed.
AYA, adolescent and young adult, advocacy, cancer, health literacy, patient involvement
Košir, U.
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Lysen, F.
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Unterecker, N.
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Deželak, T.
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Sturesson, E.
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Shakhnenko, I.
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Stark, D.
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Rizvi, K.
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Darlington, A.-S.
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Wee, L.
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van der Graaf, W.T.A.
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Husson, O.
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March 2025
Košir, U.
847b8e97-cd0d-4350-874e-2716e66e3197
Lysen, F.
8706b1fd-a69c-4547-8f86-598a36578145
Unterecker, N.
87f44d7a-b891-4330-a1ea-97355b91c604
Deželak, T.
ec9af2b1-7ab4-4622-8fd5-fffca6e96b7f
Sturesson, E.
347848bc-4afb-45cc-9016-420257d71242
Shakhnenko, I.
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Stark, D.
bc539392-7187-4388-93d3-d0cb849d25de
Rizvi, K.
78c06813-7ba7-4374-ba4a-77aaf0c8cb84
Darlington, A.-S.
472fcfc9-160b-4344-8113-8dd8760ff962
Wee, L.
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van der Graaf, W.T.A.
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Husson, O.
445510d4-92ee-4795-9fef-b92c82810484
Košir, U., Lysen, F., Unterecker, N., Deželak, T., Sturesson, E., Shakhnenko, I., Stark, D., Rizvi, K., Darlington, A.-S., Wee, L., van der Graaf, W.T.A. and Husson, O.
(2025)
Adolescent and young adult (AYA) patient involvement and engagement in European health care and research projects: expanding the scope of patient advocacy.
ESMO open, 10 (3), [104478].
(doi:10.1016/j.esmoop.2025.104478).
Abstract
Patient involvement and engagement (PI&E) in health care and research has gained prominence, shifting towards person-centred approaches and shared decision making. Patients actively participating in health care design and research lead to better quality and efficiency of care. However, implementing meaningful PI&E is challenging and requires adequate resources and evaluation frameworks so that it does not result in tokenism. This is particularly important when considering niche areas like adolescents and young adults (AYAs) with cancer. As AYAs’ unique needs continue to gain recognition, it is becoming increasingly important to incorporate their expertise and diverse perspectives in navigating care. Large-scale European consortia that focus specifically on AYAs offer opportunities to establish successful partnerships with AYAs in the design and creation of the next generation of equitable, diverse, and inclusive cancer care. Concrete actions for meaningful AYA PI&E are discussed.
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e-pub ahead of print date: 24 February 2025
Published date: March 2025
Keywords:
AYA, adolescent and young adult, advocacy, cancer, health literacy, patient involvement
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Local EPrints ID: 499432
URI: http://eprints.soton.ac.uk/id/eprint/499432
ISSN: 2059-7029
PURE UUID: 9628b1ae-0862-40fa-9087-cabd91f4cc87
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Date deposited: 20 Mar 2025 17:30
Last modified: 29 Aug 2025 01:45
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Contributors
Author:
U. Košir
Author:
F. Lysen
Author:
N. Unterecker
Author:
T. Deželak
Author:
E. Sturesson
Author:
I. Shakhnenko
Author:
D. Stark
Author:
K. Rizvi
Author:
L. Wee
Author:
W.T.A. van der Graaf
Author:
O. Husson
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