'Share your views'-international consultation informs a patient engagement strategy for the Multinational Association of Supportive Care in Cancer.
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Date
2022
Authors
Wardill, H.R.
Cheung, Y.T.
Boltong, A.
Charalambous, A.
Koczwara, B.
Lustberg, M.
Tomlins, E.
Britto, J.M.
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Supportive Care in Cancer, 2022; 30(12):9953-991
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Hannah R. Wardill, Yin Ting Cheung, Anna Boltong, Andreas Charalambous, Bogda Koczwara, Maryam Lustberg, Elaine Tomlins, Joanne M. Britto
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Abstract
Introduction: Engaging with patients and the public (consumers and community) enhances the relevance of cancer control developments; however, challenges remain to integrate into processes. Medical and other professional societies are wellpositioned to foster and endorse best practice. Methods: Between October and December 2021, the Multinational Association of Supportive Care in Cancer (MASCC) conducted a global consultation with those who identified as “people affected by cancer”. Recruitment to an online crosssectional survey was by a combination of purposive and convenience sampling to determine preferred terminologies and experiences with MASCC and other cancer-related societies. Results: The survey was completed by 343 respondents from 29 countries, a majority being female (78.1%) and younger than 60 years of age (62.1%). Respondents preferred to be identified as ‘patient’ from a set of defined terms; however, this only accounted for 49–67% of selected response across geographical regions. Only 22.2% of respondents had engaged previously with MASCC, of whom 90.8% reported a positive experience through involvement with education and information, networking and collaboration, and practice guidelines. Respondents perceived areas of opportunity as early involvement in decision-making, educational initiatives, open communication, and information sharing. Across all geographical regions, responders chose a preference to contribute to future consumer research (53.0%), policy (31.7%) or consumer engagement activities (56.9%) including participation in a conference session (65.0%) or patient day (47.9%). Conclusions: This survey provides a first insight into how consumers wish to engage with MASCC. These values will be embedded into a strategy that aims for effective and sustainable partnerships with multinational consumers.
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© The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0.