Youens D, Moorin R, Harrison A, Varhol R, Robinson S, Brooks C, Boyd J
School of Public Health, Curtin University, Perth, Australia.
School of Population and Global Health, University of Western Australia.
Int J Popul Data Sci. 2020 Jan 27;5(1):1099. doi: 10.23889/ijpds.v5i1.1099.
General practice is often a patient's first point of contact with the health system and the gateway to specialist services. In Australia, different aspects of the health system are managed by the Commonwealth Government and individual state / territory governments. Although there is a long history of research using administrative data in Australia, this split in the management and funding of services has hindered whole-system research. Additionally, the administrative data typically available for research are often collected for reimbursement purposes and lack clinical information. General practices collect a range of patient information including diagnoses, medications prescribed, results of pathology tests ordered and so on. Practices are increasingly using clinical information systems and data extraction tools to make use of this information. This paper describes approaches used on several research projects to access clinical, as opposed to administrative, general practice data which to date has seen little use as a resource for research. This information was accessed in three ways. The first was by working directly with practices to access clinical and management data to support research. The second involved accessing general practice data through collaboration with Primary Health Networks, recently established in Australia to increase the efficiency and effectiveness of health services for patients. The third was via NPS MedicineWise's MedicineInsight program, which collects data from consenting practices across Australia and makes these data available to researchers. We describe each approach including data access requirements and the advantages and challenges of each method. All approaches provide the opportunity to better understand data previously unavailable for research in Australia. The challenge of linking general practice data to other sources, currently being explored for general practice data, is discussed. Finally, we describe some general practice data collections used for research internationally and how these compare to collections available in Australia.
全科医疗通常是患者与卫生系统的首个接触点,也是通往专科服务的门户。在澳大利亚,卫生系统的不同方面由联邦政府和各个州/领地政府管理。尽管澳大利亚利用行政数据进行研究已有很长历史,但服务管理和资金的这种划分阻碍了全系统研究。此外,通常可用于研究的行政数据往往是为报销目的而收集的,缺乏临床信息。全科医疗收集一系列患者信息,包括诊断结果、所开药物、所做病理检查结果等。医疗机构越来越多地使用临床信息系统和数据提取工具来利用这些信息。本文描述了在几个研究项目中所采用的方法,以获取临床而非行政方面的全科医疗数据,而迄今为止,这些数据作为研究资源几乎未被使用过。这些信息通过三种方式获取。第一种是直接与医疗机构合作以获取临床和管理数据来支持研究。第二种是通过与澳大利亚最近设立的初级卫生保健网络合作来获取全科医疗数据,设立该网络是为了提高为患者提供卫生服务的效率和效果。第三种是通过澳大利亚药品与医疗保健管理局(NPS MedicineWise)的“药物洞察”(MedicineInsight)项目,该项目从澳大利亚各地同意提供数据的医疗机构收集数据并将这些数据提供给研究人员。我们描述了每种方法,包括数据获取要求以及每种方法的优缺点。所有方法都提供了更好地了解澳大利亚以前无法用于研究的数据的机会。文中讨论了将全科医疗数据与其他来源相链接这一目前正在探索的全科医疗数据方面的挑战。最后,我们描述了国际上用于研究的一些全科医疗数据收集情况,以及它们与澳大利亚现有的数据收集情况相比如何。