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Patient Engagement in Research Design and Implementation: Moving From Infancy to Adolescence

机译:患者参与研究设计和实施:从婴儿期转向青春期

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Abstract Patient (also referred to as User or Older Adult) engaged research is a unique approach to research design, implementation, and dissemination. The practice of engaged research, in its broader sense, involves service recipients, caregivers, clinicians, and other stakeholders in prioritization of research questions, approach, and practice translation to ensure strong stewardship of funds, valid and reliable methods, and practical application. Patient engaged research also aligns with tenets of person-centered care in the inclusive nature and the expectation that the practice will improve the processes and the outcomes of research. Likewise, GSA’s focus on diversity of thought through interdisciplinary work strongly aligns with inclusion of patient and stakeholder voices in the performance of interdisciplinary research. Although patient and stakeholder engagement in research is a new approach for many, globally, funders increasingly require evidence of “meaningful” engagement in project proposals. In the United States, the Patient-Centered Outcomes Research Institute (PCORI) is well-known for funding engaged research and the National Institute on Aging (NIA) has demonstrated use of “collaborative” methods central to patient engagement within the IMPACT Collaboratory. Patient engagement literature, while growing, does not yet provide adequate guidance for replication of current or development of new approaches to patient engagement in research. Therefore, the purpose of this symposium is to frame patient engagement through a historic lens (Roes) and discuss the ethics of engagement (O’Sullivan). In addition, we will share program outcomes from three patient engagement programs: the Leading Age LTSS Center, Rural Patient & Stakeholder Engagement, and Sages in Every Setting. Patient/Person Engagement in Research Interest Group Sponsored Symposium.
机译:抽象患者(也称为用户或年龄较大的成人)订阅研究是研究设计,实施和传播的独特方法。从事研究的实践,在更广泛的意义上,涉及服务受理人员,护理人员,临床医生和其他利益相关者,以确定研究问题,方法和实践翻译的优先级,以确保基金的强大管制,有效和可靠的方法和实际应用。患者从事研究也与以人为中心的特征在包容性质中与宗旨和预期的预期对齐,以至于该做法将改善流程和研究结果。同样,GSA专注于通过跨学科工作的思想多样性,在跨学科研究表现中将患者和利益攸关方的声音纳入患者和利益相关者的声音。虽然患者和利益相关者参与研究是许多全球性的新方法,但资助者越来越需要证据“有意义”的项目提案参与。在美国,患者以患者为中心的结果研究所(PCORI)以资金从事研究而闻名,国家衰老研究所(NIA)已展示使用“协作”方法在影响协作内的患者参与。患者参与文献虽然生长,但尚未提供足够的指导,以复制目前或开发患者参与研究的新方法。因此,该研讨会的目的是通过历史镜头(ROES)框架患者接合,并讨论接合的道德(O'Sullivan)。此外,我们还将分享三个患者参与计划的计划结果:领先的时代LTSS中心,农村患者和利益相关者参与,以及每个环境中的圣人。患者/人员参与研究兴趣集团赞助研讨会。

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