PLAIN ENGLISH SUMMARY PLM is an online platform that provides tools for individuals to track their health and connect with other patients and while PLM has invited patients to participate in various research projects throughout the years, an examination into what motivates patients to want to get involved in clinical research has not been done. During our analysis of applications submitted by members of the PLM community, we looked for reasons patients want to participate in research and their overall beliefs about clinical research, in general. In addition, we analyzed obstacles and barriers toward patients' research participation. We observed the following:Patients are typically motivated by their individual needs and are most interested in research specific to their own condition.To get the most from patients' involvement and to enhance patients' contribution towards research goals, researchers should explain the research goal and requirements of each goal in clear and transparent terms, making it easy for patients to understand, thus avoiding any potential miscommunication.Future studies are needed to determine the best methods for involving patients in clinical research. BACKGROUND Historically, throughout the clinical and medical research arenas, patients have been perceived as passive "subjects" rather than as individuals who may have thoughts regarding research development, research plans, implementation of research studies, and data analysis. However, it is becoming more clear that patients increasingly want to have a more active role in clinical research studies and in the management of their own medical conditions as evidenced by a "no decision about us without us" stance, meaning patients want to make informed decisions about their health while working alongside their healthcare professionals. The central aim of this research study was to determine patients' motivations for being involved in research design and understand their perceptions of current research practices. METHODS Two independent qualitative studies were conducted. In Study 1, we analyzed applications submitted by self-identified patients from within the PatientsLikeMe (PLM) community, for acceptance onto our advisory panel. The advisory panel was tasked with developing a best practice guide for how to involve patients in research. During the qualitative analysis, we identified major reasons for and topics of interest associated with PLM members' motivation to apply to the advisory panel. In Study 2, we analyzed applications from PLM community members and from patients outside the PLM community for a patient-led patient-reported-outcome (PRO) development project. Similar to Study 1, we identified themes associated with patients' motivations to participate in developing a new PRO. RESULTS PLM members are interested in being involved in medical research for various reasons, including facilitating provider-patient communication, improving comprehension of medical information, understanding their disease, and bringing a more individualized approach to health care in general. CONCLUSION Challenges in the process of appropriate involvement of patients in research are discussed. In both studies, the applicants shared their interests in being involved in research. However, in Study 2, many of the patients shared ideas that were not appropriate for the development of a PRO, which indicated limitations in how the invitation and application explained the project to patients. Future studies should contribute to determining the most appropriate method for involving patients in various settings.

中文翻译：

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患者的研究动机和兴趣：PatientsLikeMe 上患者主导项目的志愿者特征。

简明英语摘要 PLM 是一个在线平台，为个人提供工具来跟踪他们的健康状况并与其他患者联系，而 PLM 多年来一直邀请患者参与各种研究项目，检查是什么促使患者想要参与尚未进行临床研究。在分析 PLM 社区成员提交的申请时，我们总体上寻找患者希望参与研究的原因以及他们对临床研究的总体看法。此外，我们分析了患者参与研究的障碍和障碍。我们观察到以下情况：患者通常受到其个人需求的激励，并且最感兴趣的是针对他们自身情况的研究。为了从患者身上获得最大收益 参与并提高患者对研究目标的贡献，研究人员应以清晰透明的方式解释研究目标和每个目标的要求，使患者易于理解，从而避免任何潜在的误解。未来的研究需要确定最佳让患者参与临床研究的方法。背景技术从历史上看，在整个临床和医学研究领域，患者一直被视为被动的“受试者”，而不是可能对研究开发、研究计划、研究实施和数据分析有想法的个体。然而，越来越清楚的是，患者越来越希望在临床研究和管理自己的医疗状况中发挥更积极的作用，“没有我们就不能决定我们”的立场证明了这一点，这意味着患者希望做出明智的决定他们的健康，同时与他们的医疗保健专业人员一起工作。本研究的中心目的是确定患者参与研究设计的动机，并了解他们对当前研究实践的看法。方法 进行了两项独立的定性研究。在研究 1 中，我们分析了来自 PatientLikeMe (PLM) 社区的自我认同患者提交的申请，以供我们的顾问小组接受。顾问小组的任务是制定如何让患者参与研究的最佳实践指南。在定性分析期间，我们确定了与 PLM 成员申请咨询小组的动机相关的主要原因和感兴趣的主题。在研究 2 中，我们分析了 PLM 社区成员和 PLM 社区以外的患者对患者主导的患者报告结果 (PRO) 开发项目的申请。与研究 1 类似，我们确定了与患者参与开发新 PRO 的动机相关的主题。结果 PLM 成员出于各种原因有兴趣参与医学研究，包括促进提供者与患者的沟通、提高对医学信息的理解、了解他们的疾病、并为整体医疗保健带来更加个性化的方法。结论 讨论了患者适当参与研究过程中的挑战。在这两项研究中，申请人都分享了他们参与研究的兴趣。然而，在研究 2 中，许多患者分享了不适合开发 PRO 的想法，这表明邀请和申请向患者解释项目的方式存在局限性。未来的研究应有助于确定让患者参与各种环境的最合适方法。许多患者分享了不适合开发 PRO 的想法，这表明邀请和申请向患者解释项目的方式存在局限性。未来的研究应有助于确定让患者参与各种环境的最合适方法。许多患者分享了不适合开发 PRO 的想法，这表明邀请和申请向患者解释项目的方式存在局限性。未来的研究应有助于确定让患者参与各种环境的最合适方法。