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. 2024 Jul;17(4):471-479.
doi: 10.1007/s40271-023-00667-2. Epub 2024 Feb 24.

Exploring Consumers' Motivations and Experiences of Engaging as Partners in Cancer Research

Jamie L Waterland  1 , Cassandra Beer  1 , Rowan Forbes Shepherd  1 , Laura E Forrest  2   3   4
Affiliations

Exploring Consumers' Motivations and Experiences of Engaging as Partners in Cancer Research

Jamie L Waterland et al. Patient. 2024 Jul.

Erratum in

Abstract

Background and objective: Consumer engagement improves research quality and relevance but can be difficult to implement. This study aimed to explore the motivations and understand the barriers, if any, experienced by consumers before and when partnering with cancer research teams.

Methods: Semi-structured interviews were conducted with consumers and the results analysed thematically. Two groups were recruited: consumers who were members of the consumer registry and patients who did not have previous experience of being a consumer in a researcher partnership.

Results: Twenty-one interviews were conducted with a total of 22 participants aged between 26 and 74 years. Consumers motivation was driven by altruism to help others and personal benefits. Barriers to beginning and maintaining consumer engagement included consumers' perceptions of being appreciated by researchers and meaningful communication between researchers and consumers.

Conclusions: Australian policy has made important steps towards consumer engagement in research. This study showed that demonstrating an appreciation for consumers and effective communication are key areas to consider when designing implementation strategies of these policies in the cancer research space in the future.

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Conflict of interest statement

Laura E. Forrest is a member of the editorial board of The Patient journal. Jamie L. Waterland, Cassandra Beer and Rowan Forbes Shepherd have no conflicts of interest that are directly relevant to the content of this article.

Figures

Fig. 1
Fig. 1
Motivations and barriers to partnering with cancer research teams
See this image and copyright information in PMC

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