Fukushima Masanori, Austin Christopher, Sato Norihiro, Maruyama Tatsuya, Navarro Eileen, Rocca Mitra, Demotes Jacques, Haendel Melissa, Volchenboum Samuel L, Cowperthwaite Matthew, Silverstein Jonathan C, Webb Chris, Sim Ida, Chase Marianne, Speakman John, Augustine Erika, Ford Daniel E, Kush Rebecca
Translational Research Center for Medical Innovation, Foundation for Biomedical Research and Innovation Kobe Japan.
National Center for Advancing Translational Sciences, NIH Bethesda MD USA.
Learn Health Syst. 2018 Dec 3;3(1):e10073. doi: 10.1002/lrh2.10073. eCollection 2019 Jan.
Global data sharing is essential. This is the premise of the Academic Research Organization (ARO) Council, which was initiated in Japan in 2013 and has since been expanding throughout Asia and into Europe and the United States. The volume of data is growing exponentially, providing not only challenges but also the clear opportunity to understand and treat diseases in ways not previously considered. Harnessing the knowledge within the data in a successful way can provide researchers and clinicians with new ideas for therapies while avoiding repeats of failed experiments. This knowledge transfer from research into clinical care is at the heart of a learning health system.
The ARO Council wishes to form a worldwide complementary system for the benefit of all patients and investigators, catalyzing more efficient and innovative medical research processes. Thus, they have organized Global ARO Network Workshops to bring interested parties together, focusing on the aspects necessary to make such a global effort successful. One such workshop was held in Austin, Texas, in November 2017. Representatives from Japan, Taiwan, Singapore, Europe, and the United States reported on their efforts to encourage data sharing and to use research to inform care through learning health systems.
This experience report summarizes presentations and discussions at the Global ARO Network Workshop held in November 2017 in Austin, TX, with representatives from Japan, Korea, Singapore, Taiwan, Europe, and the United States. Themes and recommendations to progress their efforts are explored. Standardization and harmonization are at the heart of these discussions to enable data sharing. In addition, the transformation of clinical research processes through disruptive innovation, while ensuring integrity and ethics, will be key to achieving the ARO Council goal to overcome diseases such that people not only live longer but also are healthier and happier as they age.
The achievement of global learning health systems will require further exploration, consensus-building, funding aligned with incentives for data sharing, standardization, harmonization, and actions that support global interests for the benefit of patients.
全球数据共享至关重要。这是学术研究组织（ARO）理事会的前提，该理事会于2013年在日本发起，此后一直在亚洲各地扩展，并延伸至欧洲和美国。数据量呈指数级增长，这不仅带来了挑战，也提供了以先前未考虑的方式理解和治疗疾病的明确机会。以成功的方式利用数据中的知识可以为研究人员和临床医生提供新的治疗思路，同时避免重复失败的实验。这种从研究到临床护理的知识转移是学习型健康系统的核心。
ARO理事会希望建立一个全球互补系统，以造福所有患者和研究人员，促进更高效和创新的医学研究过程。因此，他们组织了全球ARO网络研讨会，将相关各方聚集在一起，重点关注使这种全球努力取得成功所需的各个方面。2017年11月在得克萨斯州奥斯汀举行了一次这样的研讨会。来自日本、台湾、新加坡、欧洲和美国的代表汇报了他们在鼓励数据共享以及通过学习型健康系统利用研究为护理提供信息方面所做的努力。
本经验报告总结了2017年11月在德克萨斯州奥斯汀举行的全球ARO网络研讨会上的演讲和讨论，参会代表来自日本、韩国、新加坡、台湾、欧洲和美国。探讨了推动他们工作的主题和建议。标准化和协调是这些讨论的核心，以实现数据共享。此外，通过颠覆性创新转变临床研究过程，同时确保诚信和道德，将是实现ARO理事会克服疾病的目标的关键，即让人们不仅寿命更长，而且随着年龄增长更健康、更幸福。
实现全球学习型健康系统需要进一步探索、建立共识、与数据共享激励措施相匹配的资金、标准化、协调以及支持全球利益以造福患者的行动。
