Kotwal Sradha, Webster Angela C, Cass Alan, Gallagher Martin
The George Institute for Global Health, The University of Sydney.
Sydney School of Public Health, The University of Sydney.
Nephrology (Carlton). 2016 Jun;21(6):457-66. doi: 10.1111/nep.12721.
Linked health data bring together data about one person from varying sources such as administrative health datasets, death registries and clinical registries using a process that maintains patient privacy. Linked health data have been used for burden of disease estimates and health-care planning and is being increasingly use as a research methodology to study health service utilisation and patient outcomes. Within Australian nephrology, there has been limited understanding and use of linked health data so far, but we expect that with the increasing availability of data and the growing complexity of health care, the use of such data will expand. This is especially pertinent for the growing elderly population with advanced kidney disease, who are poorly represented in other types of research studies. This article summarizes the history of linked health data in Australia, the nature of available datasets in Australia, the methods of access to these data, privacy and ethical issues, along with strengths, limitations and implications for the future.
关联健康数据通过维护患者隐私的流程，将来自行政健康数据集、死亡登记处和临床登记处等不同来源的关于同一个人的数据汇集在一起。关联健康数据已被用于疾病负担估计和医疗保健规划，并且越来越多地被用作研究医疗服务利用情况和患者结局的研究方法。到目前为止，在澳大利亚肾脏病领域，对关联健康数据的理解和使用有限，但我们预计，随着数据可用性的增加和医疗保健复杂性的提高，此类数据的使用将会扩大。这对于不断增加的患有晚期肾病的老年人群体尤为相关，他们在其他类型的研究中代表性不足。本文总结了澳大利亚关联健康数据的历史、澳大利亚现有数据集的性质、获取这些数据的方法、隐私和伦理问题，以及优势、局限性和对未来的影响。
