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

IF 3.4 3区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Patient-Patient Centered Outcomes Research Pub Date : 2024-07-01 Epub Date: 2024-02-24 DOI:10.1007/s40271-023-00667-2

Jamie L Waterland, Cassandra Beer, Rowan Forbes Shepherd, Laura E Forrest

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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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探索消费者作为合作伙伴参与癌症研究的动机和经验。

背景和目的：消费者参与能提高研究质量和相关性，但实施起来却很困难。本研究旨在探讨消费者在与癌症研究团队合作之前和合作过程中的动机，并了解他们遇到的障碍（如果有的话）：方法：对消费者进行了半结构化访谈，并对访谈结果进行了专题分析。访谈对象分为两类：一类是消费者登记册的成员，另一类是以前没有作为消费者与研究人员合作经历的患者：共进行了 21 次访谈，22 名参与者的年龄在 26 岁至 74 岁之间。消费者的动机是帮助他人的利他主义和个人利益。开始和保持消费者参与的障碍包括消费者认为自己受到研究人员的赏识以及研究人员与消费者之间有意义的沟通：澳大利亚的政策在促进消费者参与研究方面迈出了重要一步。本研究表明，在未来的癌症研究领域，在设计这些政策的实施策略时，对消费者的欣赏和有效沟通是需要考虑的关键领域。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Patient-Patient Centered Outcomes Research HEALTH CARE SCIENCES & SERVICES-

CiteScore

6.60

自引率

8.30%

发文量

审稿时长

>12 weeks

期刊介绍： The Patient provides a venue for scientifically rigorous, timely, and relevant research to promote the development, evaluation and implementation of therapies, technologies, and innovations that will enhance the patient experience. It is an international forum for research that advances and/or applies qualitative or quantitative methods to promote the generation, synthesis, or interpretation of evidence. The journal has specific interest in receiving original research, reviews and commentaries related to qualitative and mixed methods research, stated-preference methods, patient reported outcomes, and shared decision making. Advances in regulatory science, patient-focused drug development, patient-centered benefit-risk and health technology assessment will also be considered. Additional digital features (including animated abstracts, video abstracts, slide decks, audio slides, instructional videos, infographics, podcasts and animations) can be published with articles; these are designed to increase the visibility, readership and educational value of the journal’s content. In addition, articles published in The Patient may be accompanied by plain language summaries to assist readers who have some knowledge of, but not in-depth expertise in, the area to understand important medical advances. All manuscripts are subject to peer review by international experts.

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