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肾脏病学中的以患者为中心的研究与创新。

Patient-Centered Research and Innovation in Nephrology.

机构信息

Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.

Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.

出版信息

Adv Kidney Dis Health. 2024 Jan;31(1):52-67. doi: 10.1053/j.akdh.2023.12.004.

Abstract

Patient involvement in research can improve the relevance of research, consequently enhancing the recruitment, retention, and uptake of interventions and policies impacting patient outcomes. Despite this, patients are not often involved in the design and conduct of research. The research agenda and innovations are frequently determined by the interest of health and industry professionals rather than proactively aligning with the priorities of patients. It is now being encouraged and recommended to engage patients in research priority setting to ensure interventions and trials report outcomes valuable to patients, moving away from a history of overlooking the outcomes that reflect the feel and function of patients. Involving patients ensures constant innovative research in nephrology, as this broader depth of evidence fortifies reliability and validity through knowledge gained from lived experience. Findings from such research can enhance clinical practice and strengthen decision-making and policy to support better outcomes. We aim to outline principles and strategies for patient involvement in research, including setting research priorities, identifying and designing interventions, selecting outcomes, and disseminating and translating research. Principles and strategies including engagement, education and training, empowerment, and connection and community provide guidance in patient involvement. There are increasing efforts to involve patients across all stages of research including setting research priorities. Efforts are rising to involve patients across all stages of research including priority setting, identifying and designing interventions, selecting outcomes, and dissemination and translation. Patient involvement throughout the research cycle drives innovative investigations ensuring funding, efforts, and resources are directed toward priorities of patients, contributing to catalyst advancements in care and outcomes.

摘要

患者参与研究可以提高研究的相关性,从而促进影响患者结局的干预措施和政策的招募、保留和采用。尽管如此,患者通常并未参与研究的设计和实施。研究议程和创新往往是由卫生和行业专业人员的兴趣决定的,而不是主动与患者的优先事项保持一致。现在鼓励并建议让患者参与研究优先事项的设定,以确保干预措施和试验报告对患者有价值的结果,避免忽视反映患者感受和功能的结果的历史。让患者参与可以确保肾脏病学的创新性研究不断进行,因为通过从生活经验中获得的知识,这种更广泛的证据深度可以增强可靠性和有效性。此类研究的结果可以改善临床实践,并加强决策和政策制定,以支持更好的结果。我们旨在概述患者参与研究的原则和策略,包括设定研究优先事项、确定和设计干预措施、选择结果以及传播和转化研究。包括参与、教育和培训、赋权以及联系和社区在内的原则和策略为患者参与提供了指导。越来越多的努力是让患者参与研究的各个阶段,包括设定研究优先事项。越来越多的努力是让患者参与研究的各个阶段,包括优先事项设定、确定和设计干预措施、选择结果以及传播和翻译。患者在整个研究周期中的参与推动了创新性调查,确保资金、努力和资源都针对患者的优先事项,为护理和结果的催化剂进步做出贡献。

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