‘Share your views’: international consultation informs a patient engagement strategy for the Multinational Association of Supportive Care in Cancer

Hannah R. Wardill, Yin Ting Cheung, Anna Boltong, Andreas Charalambous, Bogda Koczwara, Maryam Lustberg, Elaine Tomlins, Joanne M. Britto

Research output: Contribution to journalArticlepeer-review

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 well-positioned 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 cross-sectional 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.

Original languageEnglish
Number of pages9
JournalSupportive Care in Cancer
Early online date10 Oct 2022
DOIs
Publication statusE-pub ahead of print - 10 Oct 2022

Keywords

  • Consumer and community involvement
  • Patient and public advocacy
  • People affected by cancer
  • Supportive cancer care
  • Terminology

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