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.
Keywords: Consumer and community involvement; Patient and public advocacy; People affected by cancer; Supportive cancer care; Terminology.
© 2022. The Author(s).