公民科学推动精准医学：从愿景到实践。
Citizen science to further precision medicine: from vision to implementation.
作者信息
Petersen Carolyn, Austin Robin R, Backonja Uba, Campos Hugo, Chung Arlene E, Hekler Eric B, Hsueh Pei-Yun S, Kim Katherine K, Pho Anthony, Salmi Liz, Solomonides Anthony, Valdez Rupa S
机构信息
Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, Minnesota, USA.
School of Nursing, University of Minnesota, Minneapolis, Minnesota, USA.
出版信息
JAMIA Open. 2019 Dec 3;3(1):2-8. doi: 10.1093/jamiaopen/ooz060. eCollection 2020 Apr.
Abstract
The active involvement of citizen scientists in setting research agendas, partnering with academic investigators to conduct research, analyzing and disseminating results, and implementing learnings from research can improve both processes and outcomes. Adopting a citizen science approach to the practice of precision medicine in clinical care and research will require healthcare providers, researchers, and institutions to address a number of technical, organizational, and citizen scientist collaboration issues. Some changes can be made with relative ease, while others will necessitate cultural shifts, redistribution of power, recommitment to shared goals, and improved communication. This perspective, based on a workshop held at the 2018 AMIA Annual Symposium, identifies current barriers and needed changes to facilitate broad adoption of a citizen science-based approach in healthcare.
摘要
公民科学家积极参与制定研究议程、与学术研究人员合作开展研究、分析和传播研究结果以及将研究成果付诸实践，这有助于改善研究过程和成果。在临床护理和研究中采用公民科学方法来实施精准医疗，将要求医疗服务提供者、研究人员和机构解决一系列技术、组织和公民科学家合作方面的问题。有些变革相对容易实现，而其他变革则需要文化转变、权力重新分配、对共同目标的重新承诺以及加强沟通。基于2018年美国医学信息学会年会举办的一次研讨会，本观点识别了当前的障碍以及为促进在医疗保健领域广泛采用基于公民科学的方法而需要做出的变革。
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