Sustainability considerations for health research and analytic data infrastructures.
Sustainability considerations for health research and analytic data infrastructures.
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DOI：
10.13063/2327-9214.1113
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发表时间：
2014
期刊：
影响因子：
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通讯作者：
Kuperman GJ
中科院分区：
文献类型：
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作者：
Wilcox A;Randhawa G;Embi P;Cao H;Kuperman GJ
美国最近在创建数据基础设施方面进行了大量投资，以支持以患者为中心的结果研究(PCOR)和比较有效性研究(CER)的重要目标，并计划进行更多投资。这些初始投资虽然对基础设施的建立至关重要，但预计不会在最初的发展之后维持很长时间。为了提供最大效益，需要通过创新的融资模式维持基础设施，同时为变革和组织振兴方案和经济、社会和文化权利委员会的研究人员提供价值。根据我们在制定灵活的可持续发展战略(即，适应资源或基础设施的不同特征和机会的战略)方面的经验，我们定义了在制定可持续发展战略时重要考虑的具体因素。这些因素包括资产、扩展、复杂性和利益相关者。对每个因素进行了描述，并举例说明了它的应用。这些因素是不同资源的不同方面，可持续发展战略应该适应这些因素。我们还确定了维护基础设施的具体重要考虑因素，以便实现长期预期的好处。这些意见是作为经验教训提出的，将应用于其他可持续发展努力。我们定义吸取的经验教训，将它们与已定义的可持续性因素联系起来，作为因素之间的相互作用。利用来自不同专家组的观点和经验，我们定义了可持续发展战略的广泛特征和重要观察，这些特征可能因不同的项目而有所不同。对利益攸关方和数据基础设施之间自适应、灵活和成功的协作模式的其他描述可以通过确定其他可持续发展因素来扩展这一框架，并就如何最好地实现可持续发展提供更具体的指导。
The United States has made recent large investments in creating data infrastructures to support the important goals of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER), with still more investment planned. These initial investments, while critical to the creation of the infrastructures, are not expected to sustain them much beyond the initial development. To provide the maximum benefit, the infrastructures need to be sustained through innovative financing models while providing value to PCOR and CER researchers. Based on our experience with creating flexible sustainability strategies (i.e., strategies that are adaptive to the different characteristics and opportunities of a resource or infrastructure), we define specific factors that are important considerations in developing a sustainability strategy. These factors include assets, expansion, complexity, and stakeholders. Each factor is described, with examples of how it is applied. These factors are dimensions of variation in different resources, to which a sustainability strategy should adapt. We also identify specific important considerations for maintaining an infrastructure, so that the long-term intended benefits can be realized. These observations are presented as lessons learned, to be applied to other sustainability efforts. We define the lessons learned, relating them to the defined sustainability factors as interactions between factors. Using perspectives and experiences from a diverse group of experts, we define broad characteristics of sustainability strategies and important observations, which can vary for different projects. Other descriptions of adaptive, flexible, and successful models of collaboration between stakeholders and data infrastructures can expand this framework by identifying other factors for sustainability, and give more concrete directions on how sustainability can be best achieved.