Nova School of Business and Economics, Universidade NOVA de Lisboa, Carcavelos, Portugal
ISCTE - Instituto Universitário de Lisboa, Lisboa, Portugal.
BMJ Open. 2024 Jan 24;14(1):e077444. doi: 10.1136/bmjopen-2023-077444.
To characterise Portuguese cancer-related patient organisations and analyse their views, motivations and experiences on patient involvement in cancer research.
A multistakeholder group, comprising patient representatives and researchers, codesigned a questionnaire after a literature review, online sessions and collaborative mind maps. In May 2021, a survey was conducted among representatives of Portuguese cancer-related patient organisations, focusing on four dimensions: experience in cancer research; perception of its outcomes; motivations and expectations on patient involvement in research; and organisation characteristics.
Twenty-seven representatives from Portuguese cancer-related patient organisations responded to the questionnaire, corresponding to a 64% response rate.
Among the surveyed organisations, 26% have participated in clinical studies. Their involvement occurred in few stages of the research process and, mostly, with low levels of engagement. They showed 'great interest' in participating in most research steps, although this is not reflected in a high perception of influence over these same steps. More than half claimed to have contributed to the increase in patient recruitment and to a better understanding of informed consent by patients involved. Ensuring that research results are more aligned with the true needs of patients is the greatest motivation. Also, our results suggest that the organisation's number of employees and its integration into a European/International network play a relevant role in patient involvement in research.
This study provides the first in-depth characterisation of Portuguese cancer-related patient organisations and their views, motivations and experiences on patient involvement in cancer research. Most importantly, this study revealed that most of these organisations show great interest in being involved in different R&D stages to ensure that research results are aligned with patients' needs. Their motivation should be turned into greater and more meaningful involvement in practice, so that the cancer community can benefit from the outcomes of truly patient-centred research.
描述葡萄牙癌症相关患者组织的特点，并分析其对患者参与癌症研究的看法、动机和经验。
一个由患者代表和研究人员组成的多利益相关者小组，在文献回顾、在线会议和协作思维导图之后共同设计了一份问卷。2021 年 5 月，对葡萄牙癌症相关患者组织的代表进行了一项调查，重点关注四个方面：在癌症研究中的经验；对其结果的看法；对患者参与研究的动机和期望；以及组织特点。
27 名来自葡萄牙癌症相关患者组织的代表回答了问卷，回应率为 64%。
在所调查的组织中，26%参与过临床研究。他们的参与发生在研究过程的少数几个阶段，而且参与程度较低。他们对参与大多数研究步骤表现出“极大的兴趣”，尽管这并没有反映在对这些相同步骤的高度影响力的认知上。超过一半的人声称他们为增加患者招募和提高参与患者对知情同意的理解做出了贡献。确保研究结果更符合患者的真实需求是最大的动机。此外，我们的结果表明，组织的员工人数及其融入欧洲/国际网络的程度在患者参与研究中发挥着重要作用。
本研究首次深入描述了葡萄牙癌症相关患者组织及其对患者参与癌症研究的看法、动机和经验。最重要的是，这项研究表明，这些组织中的大多数都对参与不同的研发阶段表现出极大的兴趣，以确保研究结果与患者的需求一致。他们的动机应该转化为更大、更有意义的实际参与，以便癌症界能够从真正以患者为中心的研究成果中受益。
