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推进患者在同行评审出版物中的作者身份和合作的七项行动。

Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications.

作者信息

Bharadia Trishna, Geissler Jan, Robson Rosie, Laštíková Lucie, Porter Laura D, Richmond Grace, Johnson Ben, Roch Louise, Toroser Dikran

机构信息

Patient Author, The Spark Global, Buckinghamshire, UK.

Centre for Pharmaceutical Medicine Research, King's College London, London, UK.

出版信息

Patient. 2025 Jul 2. doi: 10.1007/s40271-025-00750-w.

Abstract

Partnerships between patients and the medical research community are strengthening. Patient involvement in research processes through collaborative workstreams provides authentic insights and perspectives, enhances trust between stakeholders and the patient community, brings balance to authorship groups and adds value and contextualisation to publications. Here, patient advocates, representatives from patient and caregiver communities and pharmaceutical and medical communications professionals propose seven actions to advance patient authorship and collaboration in peer-reviewed publications. Drawing on research, personal experience and professional insight, they call for a shift in conventional publication development practices-from seeking reasons to include patient authors to requiring justification for their exclusion-thereby facilitating greater inclusion and representation of the patient voice. The authors advocate moving beyond the concept of 'patient-centricity' towards 'patient partnership' to reflect a collaborative approach and more equitable balance of power and benefits among stakeholders. They also emphasise the importance of involving patients holistically in publication steering committees to ensure that the publication landscape includes patient perspectives and represents lived experiences. Continued facilitation and strengthening of partnerships between patient and non-patient authors is noted as essential for improving communication, understanding and equity within authorship groups. To support the visibility and recognition of patient authors, they recommend the use of the 'patient author' affiliation metatag to better identify, search, filter and standardise publications with patient involvement, identify patient authors and help build an evidence base from which best practice and guidance can be developed. Additionally, the authors highlight the need to consider and develop guidance around compensation of patient authors to acknowledge the contribution and time commitments across the research process and enable greater diversity, equity and inclusion. Finally, they stress the importance of extending the reach of publications to wider audiences through enhanced accessibility formats and open access.

摘要

患者与医学研究界之间的合作关系正在加强。患者通过协作工作流程参与研究过程,提供了真实的见解和观点,增强了利益相关者与患者群体之间的信任,为作者群体带来了平衡,并为出版物增添了价值和背景信息。在此,患者倡导者、患者及护理者群体的代表以及制药和医学传播专业人士提出了七项行动,以推动患者在同行评审出版物中的作者身份和合作。他们借鉴研究、个人经验和专业见解,呼吁改变传统的出版物开发做法——从寻找纳入患者作者的理由转变为要求为排除他们提供正当理由——从而促进患者声音得到更大程度的纳入和体现。作者们主张超越“以患者为中心”的概念,走向“患者伙伴关系”,以反映一种协作方法以及利益相关者之间更公平的权力和利益平衡。他们还强调让患者全面参与出版物指导委员会的重要性,以确保出版物领域纳入患者观点并体现实际生活经历。持续促进和加强患者与非患者作者之间的合作关系,对于改善作者群体内部的沟通、理解和公平性至关重要。为了支持对患者作者的可见性和认可,他们建议使用“患者作者”附属元标签,以更好地识别、搜索、筛选和规范有患者参与的出版物,识别患者作者,并帮助建立一个可据此制定最佳实践和指导的证据基础。此外,作者们强调需要考虑并制定关于患者作者报酬的指导方针,以认可整个研究过程中的贡献和时间投入,并实现更大的多样性、公平性和包容性。最后,他们强调通过增强可及性格式和开放获取将出版物的覆盖面扩大到更广泛受众的重要性。

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